Mental retardation is a specialist area of clinical psychology practice that aims to promote improved quality of life for individuals with mental retardation and their families. To promote improved quality of life for children and adolescents with mental retardation and their families, clinical psychologists require a range of basic and expert competencies. This chapter delineates essential areas of basic and expert competencies that will enable psychologists to be more successful in this specialized area of clinical practice. Emphasis is given to the implementation of evidence-based assessments and treatments for children and adolescents with mental retardation. With respect to assessment, the basic competencies include: (a) recognition and assessment of symptoms, (b) familiarity with contemporary definitions and classification systems, (c) intelligence testing, (d) adaptive behavior assessment, and (e) an understanding of how genetic syndromes, learning impairment, operant conditioning, environmental impoverishment, and social barriers influence behavior and development. With respect to treatment, competencies are required with respect to a range of contemporary evidence-based treatment approaches, including: (a) behavioral intervention, (b) cognitive-behavior therapy, (c) family therapy, (d) early intervention, (e) special education, (f) supported employment, and (g) pharmacological treatments. Effective use of these treatment approaches requires skillful implementation and an understanding of the basic mechanisms of change that underlie the approach. Enhancing the quality of life for some children and adolescents with mental retardation and their families will often require additional expert competencies in specialist areas, such as providing culturally-sensitive practices, treating severe problem behavior, and promoting learning in children with profound/multiple impairments. The transition from basic competence to expert clinician requires a planned and systematic approach for gaining relevant new knowledge and clinical skills. By gaining basic and expert competencies, clinicians can greatly enhance the quality of life of children and adolescents with mental retardation and their families.
45.1 3.1 Overview
Quality of life is an important outcome measure in clinical psychology (Keith, 2007). Achieving an improved quality of life for clients might thus be seen as one of the clinical psychologist’s most important objectives. Progress toward this objective is likely to be particularly important in the field of mental retardation (or intellectual disability), as there is strong evidence that impairments and lifestyle restrictions associated with this condition can negatively influence the overall quality of life (Brown, Parmenter, & Percy, 2007). Clinical psychologists working in the field of mental retardation will need a range of competencies to effectively support children and adolescents with mental retardation in achieving an improved quality of life. To clarify this objective, clinical psychologists would benefit from gaining a general overview of the quality of life concept.
45.1.1 3.1.1 Overview of the Quality of Life Concept
Quality of life includes an objective and subjective component (Cummins, 2005). The objective component covers the number, quality, and nature of one’s life circumstances, such as independence and autonomy, academic achievement, community participation, and friendships. The subjective component includes the extent of satisfaction with one’s degree of independence, participation, relationships, etc. Both components are important determinants of a person’s overall quality of life.
Quality of life for children and adolescents with mental retardation also depends on overall family functioning. Turnbull, Poston, Minnes, and Summers (2007) argued that quality of life should be viewed from the larger perspective of family functioning. In line with this larger family perspective, the emphasis of clinical practice includes provision of support for the child and his/her family. Clinical psychologists working in the field of mental retardation will therefore require skills and competencies related to both individual and family therapy.
In addition to the overall climate of family functioning (Vachha & Adams, 2005), a variety of biological, developmental, psychological, and social variables can influence the functioning and quality of life for individuals with mental retardation (La Malfa, Campigli, Bertelli, Mangiapane, & Cabras, 1997). Along these lines, Dosen (2005) stressed the need for clinicians to consider the extent to which the individual has made “new psychosocial adaptations during each developmental stage” (p. 2). Family values and cultural background should also be acknowledged in clinical practice, as these can exert considerable influence on what is considered successful adaptation and a good quality of life (Xu, Wang, Xiang, & Hu, 2005). Such perceptions are likely to vary from one family and culture to another.
45.1.2 3.1.2 Overview of Clinical Issues in Mental Retardation
Achieving improved quality-of-life outcomes under this multifaceted conceptualization will often require clinicians to simultaneously address several areas of individual and family functioning. Felce (2007) delineated a large number of issues that are likely to be of concern for individuals diagnosed with mental retardation, their families, and the larger community, including “human and legal rights, self-advocacy and empowerment, gender, sexuality, parenting, aging, palliative care, bereavement counseling, health promotion, healthy lifestyles, and quality of life” (p. xix). Many of these issues will become increasingly important during the transition to adulthood. Among children and adolescents, the main clinical issues often center around assessment and intervention to address specific behavioral deficits and excesses.
As should be clear from the above introduction, the decision to work in the field of mental retardation is certainly challenging, but it can also be highly satisfying. A competent clinical psychologist can expect to have a major positive impact on the quality of life of children and adolescents with mental retardation and their families. This chapter aims to delineate the essential areas of knowledge and competences that will enable psychologists to be more successful in this specialized area of clinical practice. In this chapter, we will focus on the clinical competencies related to the assessment and treatment of children and adolescents with mental retardation.
45.1.3 3.1.3 Overview of Chapter Content
In the next section of this chapter, we describe contemporary issues in the recognition and assessment of mental retardation. Thereafter, we identify factors that can maintain behavioral deficits and excesses commonly associated with mental retardation. Our subsequent discussion of evidence-based treatment approaches reveals the need for clinicians to gain a thorough understanding of the change mechanisms that underlie effective intervention. Developing a more evidence-based practice will require a range of competencies. In the final sections of this chapter, we describe those competencies that are most relevant to achieving improved quality of life outcomes for children and adolescents with mental retardation and suggest strategies to facilitate the transition from basic competence to expert clinician.
45.2 3.2 Recognition of Symptoms and Their Assessment
Quality of life for children and adolescents with mental retardation and their families can be greatly improved by ensuring timely recognition and assessment of symptoms. Competence in symptom recognition and assessment is required for making accurate diagnoses, counseling parents, consulting with other professionals, and planning intervention. Gaining competence in the recognition and assessment of the symptoms of mental retardation requires familiarity with contemporary definitions and classification systems.
45.2.1 3.2.1 Definitions of Mental Retardation
Definitions of mental retardation have undergone considerable change over the last several decades (Harris, 2006; Scheerenberger, 1983). Contemporary definitions of mental retardation are found in the DSM-IV-TR (American Psychiatric Association, 2000), ICD-10 (World Health Organization, 2001), and Luckasson et al. (2002). Carr and O’Reilly (2007) have provided a thorough comparison of these three systems for defining and classifying mental retardation.
All three of the above referenced systems define mental retardation in terms of two main factors: (a) significantly sub-average intellectual functioning and (b) concurrent deficits in adaptive behavior functioning. These deficits are present, and are usually first identified in the developmental period prior to adulthood (i.e., prior to the age of 18 years).
220.127.116.11 18.104.22.168 Intellectual Functioning
Significantly sub-average intellectual functioning is typically defined as an IQ score that falls two standard deviations or more below the mean on a standardized and individually administered intelligence test. Because most IQ tests have a mean of 100 and a standard deviation of 15 or 16, the cut-off score for mental retardation is generally considered to be an IQ of 70–75. This 5-point range allows for measurement error and acknowledges that the diagnosis of mental retardation is not based on IQ scores alone, but includes the requirement for concurrent deficits in adaptive behavior functioning.
22.214.171.124 126.96.36.199 Adaptive Behavior Functioning
The second major symptom of mental retardation is the presence of substantial deficits in adaptive behavior functioning. Adaptive behavior functioning is defined in the DSM-IV-TR as the extent to which the individual copes with the demands of everyday living. According to DSM-IV-TR criteria, a diagnosis of mental retardation requires deficits in adaptive behavior functioning “in at least two of the following skill areas: Communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health and safety” (American Psychiatric Association, 2000, p. 41). Clinical assessment of adaptive behavior functioning must take into account the person’s age, sociocultural background, and the environments (e.g., home, school, and community) in which the person is expected to function.
45.2.2 3.2.2 Classification of Mental Retardation
Mental retardation is classified in terms of etiology, severity, and required levels of support (Luckasson et al., 2002). With respect to etiology, mental retardation has a range of causes including environmental toxins, infections, injury, and genetic syndromes (MacLean, Miller, & Bartsch, 2001). Classification in terms of etiology is useful, as many syndromes are associated with unique behavioral phenotypes and specific intervention needs. Classification based on etiology is, however, somewhat limited because the cause of mental retardation often remains unknown. Thus, while an etiology can usually be identified in approximately 75% of cases of moderate to profound mental retardation, only up to 40% of cases of mild mental retardation have a known cause (Harris, 2006). These percentages are likely to improve with advances in genetic and biomedical research.
188.8.131.52 184.108.40.206 Severity
Clinical psychologists have found it useful to classify mental retardation in terms of severity. Severity in this context generally refers to the degree of general intellectual impairment. Four levels of severity are listed in the DSM-IV-TR: Mild, Moderate, Severe, and Profound. Classification in terms of severity is useful because the presenting profile and needs of individuals with mild mental retardation, for example, are likely to be very different from the needs of individuals with severe and profound mental retardation. However, it must be recognized that there is considerable variability in cognitive and adaptive behavior functioning and learning potential within each of these four categories.
220.127.116.11.1 Mild Mental Retardation
Mild mental retardation is associated with IQ scores of 50–55 to approximately 70. Mild mental retardation is often attributed to cultural–familial factors, but etiology may include the full range of known causes (i.e., injury, infection, genetic syndrome, etc.). Cases of mild mental retardation are often not identified until the child enters school and begins to fail academically. However, clinicians should be alert to delays in early developmental milestones (see Carr & O’Reilly, 2007, pp. 4–6), as these may indicate the presence of mild mental retardation that might not be otherwise noticed until the school years.
18.104.22.168.2 Moderate Mental Retardation
Moderate mental retardation is associated with IQ scores that range from 34–40 to 50–55. Thus, an individual with an IQ score of 50 or 55 could be classified as having mild or moderate mental retardation depending on the extent of adaptive behavior deficits. Generally, individuals with moderate mental retardation are more likely to have a known etiology than those with mild mental retardation. Because of this and the more obvious developmental delays, moderate mental retardation is usually recognized during early childhood.
22.214.171.124.3 Severe and Profound Mental Retardation
Severe and profound mental retardation are associated with IQ scores of 20–25 to 35–40 and below 20 or 25, respectively. Most of these individuals will be identified in infancy owing to known etiology and significant developmental delay. Their learning and behavior deficits are usually so substantial that obtaining a reliable score on an IQ test is difficult. Individuals with severe and profound mental retardation often present with major health-related problems (e.g., epilepsy) and additional sensory and physical impairments, which complicate assessment and intervention.
126.96.36.199 188.8.131.52 Levels of Support
The American Association on Intellectual and Developmental Disabilities has moved away from the classification in terms of severity, based largely on IQ scores, to one focused on the types and amounts of required supports (Luckasson et al., 2002). Four levels of support are identified: Intermittent, Limited, Extensive, and Pervasive. These categories represent a continuum ranging from brief periods of targeted intervention at specific times, such as teaching interview skills when seeking employment (Intermittent) to more constant, ongoing, and life-sustaining support across all areas of functioning (Pervasive). Levels of support do not necessarily correspond to severity of mental retardation. Instead, level of required support should be based on assessed needs, which are likely to change over time. An adolescent with mild mental retardation might, for example, require extensive supports for a short period of time to address emerging problem behaviors. After this, only intermittent supports might be necessary to maintain treatment gains.
45.3 3.3 Maintenance Factors of Mental Retardation
The types of clinical problems that negatively affect independence and quality of life for children and adolescents with mental retardation can be conceptualized in terms of behavioral deficits and excesses (Lovaas, 2003). Deficits are likely to be present in the communication, social, daily living, play and leisure, and fine and gross motor domains (Sparrow, Cicchetti, & Balla, 2005). Behavioral excesses include self-injury, aggression, property destruction, tantrums, hyperactivity, and stereotyped movements. It is important to note that the specific domains affected and the nature and extent of the presenting deficits and excesses will vary considerably from individual to individual. Still, behavioral deficits and excesses tend to be more obvious and significant as the severity of mental retardation increases (Schroeder, Tessel, Loupe, & Stodgell, 1997). Numerous factors interact to maintain the behavioral deficits and excesses of individuals with mental retardation. These factors include genetic syndromes, learning impairment, operant conditioning, environmental impoverishment, and social barriers.
45.3.1 3.3.1 Genetic Syndromes
Mental retardation is associated with a large number of genetic syndromes, such as Down, Fetal Alcohol, Fragile X, and Angelman syndrome (Percy et al., 2007). Many of the known genetic syndromes are associated with a distinct pattern of behavioral deficits or excesses. For example, recognizing that an individual has Fetal Alcohol syndrome indicates a likely pattern of symptom presentation and associated characteristics (e.g., hyperactivity, speech impairment, and sensory impairment) (Burd, Cotsonas-Hassler, Martsolf, & Kerbeshian, 2003). Many syndromes also have a unique behavioral phenotype (e.g., self-biting in Lesch-Nyhan syndrome), prognoses (e.g., regression in Rett syndrome), and intervention requirements (e.g., diet management in Prader-Willi syndrome). Recognition of syndrome-specific behaviors, prognoses, and intervention needs is vital for clinical management (Harris, 1987).
45.3.2 3.3.2 Learning Impairment
Children and adolescents with mental retardation do not learn as easily or as quickly as their typically developing peers (Jensen & Rohwer, 1968). In particular, they seem to have considerable difficultly in gaining knowledge of the world via more symbolic or social learning processes, such as incidental learning, verbal instruction, modeling, and observational learning (Remington, 1996). To some extent, this difficulty stems from attending to irrelevant aspects of the environment and over-reliance on adult cues, phenomena known as stimulus over-selectivity (Wilhelm & Lovaas, 1976) and outer-directedness (Turnure & Zigler, 1964), respectively. Impairments of symbolic learning potentially indicate the need for more direct and systematic instruction to promote learning (Snell & Brown, 2006).
45.3.3 3.3.3 Operant Conditioning
Behaviors, such as aggression, self-injury, and tantrums, are often maintained by specific types of reinforcing consequences such as (a) contingent attention from adults, (b) access to pre-ferred objects and activities, and (c) escape from non-preferred activities (Carr, 1977; Iwata et al., 1994). These behaviors may persist because the individual has difficulty learning appropriate alternatives (Sigafoos, Arthur, & O’Reilly, 2003). Identifying operant contingencies that evoke and maintain behavioral excesses is an important component of clinical practice for individuals who present with severe problem behavior.
45.3.4 3.3.4 Environmental Impoverishment
Numerous studies have implicated impoverished environments in the maintenance and exacerbation of the cognitive impairment and behavioral deficits and excesses associated with mental retardation (Hart & Risely, 1995; Horner, 1980; Skeels & Dye, 1939). The child’s environment and experiences can be impoverished both socially and physically. Lack of stimulation, poor health care and nutrition, and unresponsive or abusive parenting are potential maintenance factors in mental retardation. Sensory impairments can also lead to deprivation of experiences that can maintain and exacerbate learning and behavior problems. By implication, the impact of such factors should be lessened by creating more stimulating, responsive, and nurturing environments and relationships.
45.3.5 3.3.5 Social Barriers
The mental retardation label can be stigmatizing and lead to negative attitudes, lowered expectations, and restricted opportunities (Krajewski & Flaherty, 2000; Rosenthal & Jacobson, 1968). Increasing technological complexity, which demands a high level of cognitive ability, is another potential barrier to participation (Brown, 2007). Clinical efforts to improve attitudes and behaviors may limit the extent to which the person is handicapped by such barriers. For example, a severely retarded child may be unable to talk, but she will be less handicapped if she can be taught manual signs and if others in her environment accept this alternative form of communication. Fortunately, clinical psychologists can draw on a range of evidence-based treatment approaches to lessen the impact of the various bio–psycho–social factors that maintain the behavioral deficits and excesses associated with mental retardation.
45.4 3.4 Evidence-Based Treatment Approaches
Evidence-based practice involves the use of treatment approaches that have been validated through scientific research. A number of treatment approaches have been scientifically validated for improving the functioning of individuals with mental retardation. Competence in the clinical application of these approaches is likely to enhance the quality of life for children and adolescents with mental retardation and their families. The range of contemporary evidence-based treatment approaches includes: (a) behavioral intervention, (b) cognitive behavior therapy, (c) family therapy, (d) early intervention, (e) special education, (f) supported employment, and (g) pharmacological treatments.
45.4.1 3.4.1 Behavioral Intervention
Since the 1960s, applied research has repeatedly demonstrated the efficacy of behavioral intervention for improving the functioning of individuals with mental retardation (Thompson, 1977). Behavioral intervention involves application of empirically validated principles of learning to produce changes in socially significant behaviors. Behavioral intervention is associated with the more general paradigm of applied behavior analysis (Baer, Wolf, & Risley, 1987). Applied behavior analysis evolved from operant research into basic learning processes such as shaping, chaining, fading, and differential reinforcement. These and other operant principles have been adapted to create a large number of behavioral procedures, which have in turn been applied to teach a wide range of adaptive skills to individuals with mental retardation, including communication, academic, social, self-care, daily living, play, leisure, community living, and vocational skills (Duker, Didden, & Sigafoos, 2004). Behavioral procedures have also proven highly effective in the treatment of aggression, self-injury, stereotyped movements, and other excess or aberrant behavior (O’Reilly et al., 2007).
Overall, behavioral intervention is a well-established approach for addressing the behavioral deficits and excesses of individuals with mental retardation. This approach has considerable external validity, with demonstrated applicability to infants, children, adolescents, and adults with mild, moderate, severe, and profound mental retardation of varying etiologies. The expertise and support required to effectively implement such treatments will vary depending on the individual client, the skill areas being addressed, and the specific techniques that make up the overall treatment package (e.g., extinction, errorless learning, response shaping). When appropriate intervention targets are identified via careful assessment (Matson & Wilkins, 2007), skillfully implemented behavioral intervention can greatly improve the quality of life for children and adolescents with mental retardation.
45.4.2 3.4.2 Cognitive Behavior Therapy
Cognitive behavior therapy (CBT) has been used with some success in clinical practice for individuals with mental retardation (Dagnan & Lindsey, 2004). The CBT approach is based, in part, on the theory that dysfunctional thoughts, beliefs, self-perceptions, and feelings may underlie some of the problems of adjustment that affect people’s lives (Beck, 1976). Typically, as part of CBT, the person might need to learn to identify the dysfunctional cognitions and then learn to adopt alternative thoughts, beliefs, and feelings to deal with problematic situations. By adopting the alternative cognitions, the individual will hopefully show better psychosocial adjustment.
CBT has been used to address a variety of issues that can negatively affect the quality of life for individuals with mental retardation. Examples of areas in which CBT has been successfully applied include anger management, emotional awareness and regulation, and the treatment of depression and anxiety (Lindsey, Neilson, & Lawrenson, 1997). A variety of useful self-management strategies (e.g., identifying the target behavior and its triggers, practicing appropriate responses, and seeking feedback on performance) could also be viewed as being consistent with the CBT approach (Harchick, Sherman, & Sheldon, 1992). Development of self-management skills has enabled many individuals with mental retardation to maintain improved social skills and reach higher levels of academic and vocational performance. Through self-management, some individuals might also learn to control aggressive outbursts (cf. Allen, 2000).
CBT seems to require a high degree of verbal interaction between therapist and client, making the approach perhaps more suitable for individuals with mild mental retardation. Even then, clinicians often need to simplify the therapeutic process to ensure comprehension. For example, children and adolescents with mental retardation will first need to learn how to label and identify emotions before learning how to accurately report and describe their own emotional responses to specific situations (Dagnan, Jahoda, & Stenfert Kroese, 2007). Still, with appropriate adaptations, some children and adolescents with mild mental retardation may be able to benefit from CBT (Willner & Hatton, 2006).
45.4.3 3.4.3 Family Therapy
Parenting a child with mental retardation can be stressful, but does not necessarily lead to inevitable family breakdown (Blacher & Baker, 2002). Indeed, there are a variety of family therapy approaches that can help reduce stress and prevent family dysfunction (Jackson & Leonetti, 2001). One approach aims to increase knowledge by providing parents with educational information about mental retardation. This type of parent education has been delivered via workshops, lectures, and dissemination of printed information. The effectiveness of parent education seems to depend on the timeliness of information and extent to which the program builds parental confidence (Abidin, 1980). A second approach focuses on developing specific parental skills, such as training parents to manage child behavior problems (Sanders, Mazzucchelli, & Studman, 2004) or respond to emerging child language (Yoder, Warren, McCathren, & Leew, 1998). While competency-based training of specific parent skills can be highly effective for certain families (Kazdin, 1997), not all of the problems that families experience are related to a lack of specific parenting skills. In addition, there has been relatively limited research on sibling issues and diversity, in terms of culture and non-traditional families. Consequently, clinical psychologists may need to consider individualized counseling to support diverse families struggling with issues such as sibling adjustment, parent psychopathology, socioeconomic disadvantage, and limited social supports.
45.4.4 3.4.4 Early Intervention
Developmental delays should be identified as soon as possible so that the child can receive effective early intervention services. Effective early intervention programs typically include a combination of general environmental enrichment, behavioral intervention, family therapy, educational programming, and speech, occupational, and physical therapies. While such services may not necessarily prevent mental retardation (Gilhousen, Allen, Lasater, Farrell, & Reynolds, 1990), there are several evidence-based early intervention programs with demonstrated efficacy for improving child and family functioning (Baker & Feinfield, 2007; Feldman, 2004; Guralnick, 1997; Mahoney, Perales, Wiggers, & Herman, 2006).
One particularly effective approach, known as early intensive behavioral intervention, consists of 25–40 h per week of behavioral intervention with treatment continuing for 2 or more years. Treatment goals generally focus on developing the child’s imitation and discrimination abilities and teaching adaptive behaviors (e.g., communication, social, play, and academic skills). Several outcome studies involving children with autism or developmental delay and low initial IQ scores have shown that this form of early intervention can produce clinically significant and long-term improvements in both intellectual and adaptive behavior functioning (Lovaas, 1987; McEachin, Smith, & Lovaas, 1993; Remington et al., 2007; Sallows & Graupner, 2005).
45.4.5 3.4.5 Special Education
In the United States, under the Individuals with Disabilities Education Act of 1997 (IDEA-97), children with mental retardation and other disabilities have the right to a free and appropriate public education in the least restrictive environment. Successful inclusion of children with mental retardation in the least restrictive environment will often require special education to promote academic achievement and develop age-appropriate behavior. Academic achievement among students with mild to moderate mental retardation can often be improved using direct instructional strategies (Adams & Carnine, 2003). With direct instruction, the teacher presents discrete and repeated opportunities for learning and provides cues and feedback until the child reaches a high level of fluency.
Direct instruction is often combined with ongoing evaluation of the child’s performance using valid curriculum-based measures (e.g., percentage of words spelled correctly during brief daily spelling tests). Students with more severe levels of mental retardation will benefit from a functional curriculum that targets improvement of self-care, social, communication, and other adaptive behaviors. These behaviors can be effectively taught using systematic instructional strategies, such as task analysis, response prompting, prompt fading, and reinforcement (Snell & Brown, 2006). In addition to systematic instruction across a range of adaptive behavior domains and academic areas, some children will require more intensive behavioral intervention to promote social interaction, participation, and appropriate behavior (Duker et al., 2004).
45.4.6 3.4.6 Supported Employment
A variety of supported employment approaches have been developed for adolescents and young adults with mental retardation. The intensity of support ranges from initial help in securing employment (e.g., job searching and effective interviewing) to teaching specific job skills (Inge & Moon, 2006). Such services are often provided as part of the child’s overall educational program or through funded vocational rehabilitation programs. The same types of behavioral and educational strategies that are used to teach adaptive behaviors (e.g., communication, self-care, and daily living skills) are also effective for teaching a variety of employment-related and specific job skills. While acquisition of employment-related and specific job skills is certainly important, many employment placements fail due to lack of social skills (Wehman, 1996). Thus, social skills training should be included as part of supported employment programs (Matson & Wilkins, 2007).
45.4.7 3.4.7 Pharmacological Treatments
Psychotropic medications are widely used in the treatment of people with mental retardation (Morgan, Campbell, & Jackson, 2003). Various medications, including antidepressants, anti-psychotics, and mood stabilizers, have been used to treat comorbid psychiatric disorders and manage severe behavior problems. In a recent review of this literature, Deb et al. (2008) noted that while there is some support for use of psychotropic medications for people with mental retardation, methodological problems make it difficult to fully evaluate the efficacy of such medications when used on individuals with mental retardation. Clinical psychologists working in the area of mental retardation are likely to have individuals on their caseloads receiving these types of medications and can contribute to the evaluation of such treatments by collecting data on relevant target behaviors (e.g., symptoms of depression, and frequency and severity of problem behavior) and monitoring drug side effects. To this end, several assessment scales have been developed to assess the effects and side effects of psychotropic medications in individuals with mental retardation (Aman & Singh, 1994; Matson et al., 1998; Mayville, 2007).
45.5 3.5 Mechanisms of Change Underlying the Intervention
Effective use of the evidence-based treatment approaches requires more than skillful implementation of proven techniques or procedures. In addition to competence in the application of a particular treatment approach or specific procedure, effective evidence-based treatment also requires an understanding of the basic mechanisms of change that underlie the approach or procedure. This understanding is necessary for the clinician to effectively modify the intervention plan to suit the unique characteristics of the client and context (Linscheid, 1999). Because mental retardation is not a homogeneous condition, there is often a need to modify and troubleshoot the intervention plan and procedures in light of the person’s unique characteristics, circumstances, and response to treatment.
Kazdin (2007) stressed the importance of identifying mechanisms of change that underlie evidence-based psychotherapies. In this context, Kazdin emphasized the need to identify intervening variables, such as genetic syndrome or severity of mental retardation, that can influence or moderate the magnitude of treatment effects. Consideration of intervening variables should enable clinicians to select treatment approaches that are suited to the individual’s characteristics. Kazdin also emphasized the need for more research to identify the basic processes that are directly responsible for the therapeutic effect. Knowledge of these processes or mechanisms of change will facilitate the design of new and more effective treatments.
In the treatment of individuals with mental retardation, clinicians should also consider the mechanisms through which the treatment leads to an enhanced quality of life for those individuals and their family. It is important to note that the precise mechanisms of change often remain unclear. Still, for the several major approaches used in the treatment of mental retardation, plausible change mechanisms can be proposed.
45.5.1 3.5.1 Mechanisms of Change Underlying Behavioral Intervention
Behavioral interventions produce change by increasing or decreasing the probability of behavior through operant conditioning. The conditioning process for teaching new adaptive behaviors includes: (a) manipulating establishing operations (e.g., deprivation) to increase motivation, (b) arranging relevant discriminative stimuli to set the occasion for behavior, (c) evoking behavior in the presence of relevant discriminative stimuli, and (d) arranging ongoing reinforcement on some appropriate schedule to strengthen and maintain behavior. Excess behaviors are made less probable by (a) eliminating the contingencies of reinforcement that maintain the behavior (i.e., operant extinction), (b) building response inhibition through punishment contingences, and (c) teaching replacement adaptive skills that are more efficient than excess behavior at gaining reinforcement for the individual. For operant conditioning to produce enduring changes in the person’s behavioral repertoire, clinicians need to teach new behaviors that can be generalized to natural environments and that will continue to produce reinforcement once training has ended (Baer, 1999; Esveldt-Dawson & Kazdin, 1998). Acquisition of new adaptive behaviors and replacement of excess behavior through the mechanisms of operant conditioning improves the quality of life by enabling the individual to participate more fully, appropriately, and effectively in a wider range of home, school, vocational, and community environments.
45.5.2 3.5.2 Mechanisms of Change Underlying Cognitive-Behavior Therapy
The mechanisms of change underlying CBT are presumed to stem from changing a person’s dysfunctional thoughts, beliefs, and perceptions. By first working to change the person’s negative thoughts, beliefs, and perceptions, it may then be easier to change the person’s behavior in specific situations. For example, if an adolescent with mild mental retardation has few friends at school and believes that this is because his classmates hate him, then he is perhaps less likely to initiate any interactions with these peers. By changing his perception from one of being hated to one of simply being unfamiliar to his peers, it may be easier to motivate him to initiate positive interactions with peers. However, Kazdin (2007) noted that the causal direction of change in such therapeutic approaches has been difficult to determine. Instead of changed cognitions leading to meaningful changes in behavior; for instance, it could be the case that changes in behavior are responsible for any changes in the person’s thoughts, beliefs, and perceptions. In any event, the overt expression of negative thoughts, beliefs, and perceptions could be conceptualized as a type of excess behavior that would be important to change in its own right. Such changes might be achieved through operant mechanisms (e.g., teaching and reinforcing positive belief statements, extinguishing negative statements, etc.). By reducing expression of negative thoughts, beliefs, and perceptions and concurrently increasing the expression of more positive thoughts, beliefs, and perceptions, clinicians may be able to enhance some of the more subjective aspects of the person’s quality of life.
45.5.3 3.5.3 Mechanisms of Change Underlying Family Therapy
One mechanism of change underlying family therapy is based on the reciprocal nature of parent–child interactions. That is the notion of changing parent behavior to affect changes in the child’s behavior. Problem behavior, for example, often leads to a pattern of coercive parent–child interactions that can negatively affect family functioning (Patterson, 2002). With respect to adaptive behaviors, some children might fail to show gains in this area if parents provide few learning opportunities or complete tasks for the child, rather than facilitating child independence. This pattern of dependence also increases the burden of care for parents, which may in turn increase stress and reduce the quality of life (Woolfson & Grant, 2006). Breaking any coercive patterns of interaction and boosting the parents’ confidence in their ability to promote child independence are two important ways in which family therapy seeks to improve the quality of life for children and adolescents with mental retardation and their families.
45.5.4 3.5.4 Mechanisms of Change Underlying Early Intervention
Early intervention often aims to improve general intellectual functioning by (a) increasing environmental stimulation and parent responsivity, (b) improving nutrition and health, (c) teaching adaptive behaviors, and (d) enhancing motivation. This combination of foci is presumed to boost IQ and thereby prevent or attenuate the severity of mental retardation (Gilhousen et al., 1990). There is some evidence to support such possible change mechanisms. Outcome studies on the effects of early intensive behavioral intervention for children with developmental delay, for example, have consistently demonstrated positive changes in IQ scores (Lovaas, 1987; McEachin et al., 1993; Remington et al., 2007; Sallows & Graupner, 2005). Matson (2007a), however, cautioned that the reported changes in IQ scores might not necessarily stem from a general increase in intellectual functioning. Instead, such changes might reflect increased compliance and teaching to the test. Interestingly, increases in IQ scores from early intensive behavioral intervention are not always accompanied by significant improvements in critical areas of adaptive behavior functioning, such as communication and social skills (Remington et al., 2007).
45.5.5 3.5.5 Mechanisms of Change Underlying Special Education
Special education aims, in part, to improve a child’s ability to profit from education. No one mechanism of change underlies special education practice. Instead, special education programs tend to adopt a variety of treatment approaches that are often fairly loosely related to behavior analytic principles. Direct, systematic, and intensive instruction, for example, is intended to produce enduring changes in the child’s behavioral repertoire that will enable children to function more effectively once they exit school.
45.5.6 3.5.6 Mechanisms of Change Underlying Supported Employment
Upon exiting school, quality of life for individuals with mental retardation will depend to some extent on their ability to secure meaningful employment. Supported employment has a positive impact on their quality of life by developing job and employment-related skills that enable them to gain and maintain employment. This in turn produces a steady income, which improves one’s objective quality of life. For individuals with mental retardation, doing well in a steady job – which often requires ongoing support – can also increase self-esteem, which in turn has a positive impact on one’s subjective quality of life (Holloway & Sigafoos, 1999). Once in a stable employment setting, ongoing support is provided to develop social skills and build a network of positive social relationships that further enhance the quality of life.
45.5.7 3.5.7 Mechanisms of Change Underlying Pharmacological Treatments
Psychotropic medications are presumed to produce behavior change through two mechanisms: first, by having a corrective or compensatory effect on neurological functioning and second, by direct symptom reduction (Katic & Steingard, 2001). Risperidone, for example, appears to correct serotonin imbalances implicated in psychotic behavior. However, while widely used in the treatment of problem behaviors among individuals with mental retardation, its efficacy for this purpose is questionable (Singh, Matson, Cooper, Dixon, & Sturmey, 2005). With respect to the second presumed mechanism of change, psychotropic medications have demonstrated efficacy for symptom reduction (Luiselli, Blew, & Thibadeau, 2001). Reducing aggressive outbursts via some medication, for example, might then provide a window of opportunity for enabling greater participation in other therapy programs. On the other hand, mechanisms by which psychotropic medications produce behavioral change in persons with mental retardation could also stem from other processes, such as a general sedative effect. This could make other forms of treatment more difficult to implement in some cases.
45.6 3.6 Basic Competencies of the Clinician
The basic competencies required of clinical psychologists working in the field of mental re-tardation include: (a) referral clarification, (b) initial assessment, (c) case formulation, and (d) developing, implementing, and evaluating evidence-based treatments. Competence in each of these areas is central to effective clinical practice for children and adolescents with mental retardation (Matson, Terlonge, & Minshawi, 2008; Sturmey, 2008). In all aspects of their work, clinicians must of course strive to maintain the highest level of ethical practice.
45.6.1 3.6.1 Referral Clarification
When a referral is made, clinicians should first clarify the nature of the referral. A request to assess the intellectual functioning of a young child showing developmental delay is very different from a request to differentiate between mental retardation and learning disability in an older child who is failing academically. Before taking on a case, the clinician must determine what competencies might be needed and whether she/he has those required competencies. If not, it is of course necessary and appropriate to refer the case elsewhere.
Clarifying a referral requires effective clinical interviewing skills (Lovitt, 1998). For beginning clinicians it can be helpful to develop a checklist of items that need to be covered during the initial referral interview. Often it can be the most basic information that the beginning clinician fails to record (e.g., child’s name, age, contact details, history, recent changes in the child’s behavior, illnesses, family crises, etc.). The clinician must learn to ask the right questions to the referring agent, seek follow-up information, and rephrase questions as necessary. The referring agent (e.g., parent, teacher) should be allowed to check the clinical summary of the initial referral interview for accuracy.
45.6.2 3.6.2 Initial Assessment
Once a referral has been clarified, the clinical psychologist will need to decide what initial assessments are warranted. A primary role of clinical psychologists has long been the diagnostic assessment of individuals suspected of having mental retardation. In cases where mental retardation is suspected, standardized assessment of intellectual and adaptive behavior functioning is warranted to confirm or rule out the diagnosis. This type of assessment data can also be very useful for prioritizing treatment goals and identifying required levels of support. Clinical psychologists therefore need to be familiar with a variety of psychological assessment techniques (Matson, 2007b), some of which require more expert competences (see Section 3.7: Expert Competencies of the Clinician). Assessment of intellectual and adaptive behavior functioning are arguably the two most important and basic competencies of clinical practice in mental retardation.
184.108.40.206 220.127.116.11 Intellectual Functioning
Selecting and administering IQ tests, and interpreting their results, are basic competencies for professional practice in clinical psychology. MacLean, Miller and Bartsch (2001) and O’Reilly and Carr (2007) reviewed several commonly used intelligence tests for assessing mental retardation. These tests include the (a) Bayley Scales of Infant Development, third edition (BSID-III) (Bayley, 2006), (b) Kaufman Assessment Battery for Children, second edition (KABC-II) (Kaufman & Kaufman, 2004), (c) Leiter International Performance Scale Revised (LIPS-R) (Roid & Miller, 1997), (d) Weschler Preschool and Primary Scale of Intelligence, third edition (WPPSI-III) (Weschler, 2002), (e) Weschler Intelligence Scale for Children, fourth edition (WISC-IV) (Weschler, 2003), and (f) Stanford-Binet, fifth edition (SB5) (Roid, 2003). It is important to note that each of these tests has strengths and limitations that will make each of them more or less suitable in specific circumstances. The BSID-III, for example, is a better choice for assessing young children (1–42 months of age) than the WISC-IV, whereas the Leiter, being a totally nonverbal test, is appropriate for individuals who lack speech.
18.104.22.168 22.214.171.124 Adaptive Behavior
To complement measures of intellectual functioning, clinical psychologists also need to acquire competence in assessing adaptive behavior and interpreting the results of such assessments. Commonly used measures for assessing adaptive behavior include the Vineland-II Adaptive Behavior Scales (2nd ed.) (Sparrow, Cicchetti, & Balla, 2005), Adaptive Behavior Scale-School Version (Lambert, Nihira, & Leyland, 1993), Adaptive Behavior Scale-Residential and Community Version (Nihra, Leyland, & Lambert, 1993), the Scales of Independent Behavior (Bruininks, Woodcock, Weatherman, & Hill, 1996), and the Adaptive Behavior Assessment System II (Oakland & Harrison, 2008). Carr and O’Reilly (2007) summarized several commonly used adaptive behavior scales and noted their strengths and limitations. As with IQ tests, clinicians should be aware of these various scales to ensure that they select and use appropriate instruments for the individual case. When interpreting the results of such scales, Dixon (2007) noted that deficits should be assessed relative to chronological age, gender, opportunity, and family and cultural expectations.
126.96.36.199 188.8.131.52 Assessment for Treatment Planning
In addition to their use in diagnosis and classification of mental retardation, results of intellectual functioning and adaptive behavior assessments can often be of tremendous value in treatment planning. Matson and Wilkins (2007) emphasized the need for clinicians to identify skill areas that would be most important to target for intervention. Along these lines, the extent of deficit in specific areas of intellectual or adaptive behavior functioning can be identified from appropriately administered tests and rating scales. The most substantial or important of these identified deficits could then be targeted for improvement through evidence-based intervention. In determining which areas to prioritize for intervention, clinicians should consider those that are most likely to enhance the individual’s quality of life, as well as environmental demands, and family and cultural values. Clinicians will therefore need competencies in using standardized assessment results not only for diagnostic purposes, but also to inform the content and procedures of individualized treatment plans.
184.108.40.206 220.127.116.11 Levels of Support
Identification of the types and amounts of needed support for individuals with mental retardation and their families should be guided by the goal to enhance their quality of life. Designing appropriate support services requires a systematic assessment of individual and family needs (Carr & O’Reilly, 2007). Along these lines, Thompson et al.’s (2003) Supports Intensity Scale was developed to assist clinicians in identifying the required amounts and types of supports for persons aged 16–70 years. The scale has good psychometric properties for its intended purpose and would certainly enhance other measures of adaptive behavior functioning. Competence in identifying the required levels of supports would no doubt be a clinical advantage for many reasons, including gaining funding for needed services (Carr & O’Reilly, 2007). Assessing levels of support, and indeed all of the above-mentioned assessments, will often need to be repeated in response to changes in the individual’s development, as well as changes in family and environmental circumstances.
45.6.3 3.6.3 Case Formulation
Case formulation involves developing an organized summary of assessment data for use in treatment planning (Hersen & Rosqvist, 2008). Unlike other areas of clinical practice, where clients may present with a specific problem (e.g., test anxiety or a phobia), individuals with mental retardation have global deficits across a wide range of functioning areas. Children and adolescents also often present with numerous problem behaviors (Sturmey, 2008). Clinical practice in mental retardation therefore requires competence in linking a wide range of assessment data (e.g., IQ tests, adaptive behavior assessments) to a comprehensive array of services, including, for example, behavioral intervention, family therapy, and special education. In addition to interpreting the results of various types of assessments, clinicians will need to draw out the treatment implications from these assessments and develop specific treatment plans based on sound psychological theory and the best available evidence. To ensure that cases are conceptualized in ways that will enhance the quality of life, clinicians need to consider maintenance factors (e.g., genetic syndromes, learning impairment, operant conditioning, environmental impoverishment, and social barriers) that may moderate the efficacy of any proposed evidence-based treatments. Case formulations will often need to be modified as the child ages and in light of other changed circumstances (development of psychiatric symptoms, transition to high school, etc.).
45.6.4 3.6.4 Developing, Implementing, and Evaluating Evidence-Based Treatments
Once the case has been formulated, the clinician will need to develop more specific treatment protocols. Parents, teachers, and other staff will require training to be able to effectively implement the treatment protocols. In addition to providing this training, clinical psychologists should evaluate the effects of treatment protocols on child behavior and family functioning.
Developing a treatment protocol involves systematically searching the literature to identify an appropriate evidence-based treatment procedure and then modifying that procedure to suit the unique characteristics of the child and context (Schlosser, 2003). For example, well-established techniques for teaching functional communication to children with severe mental retardation have been widely disseminated in the scientific literature, but the chosen technique may still need to be adapted to ensure success with any particular child (Sigafoos, Arthur-Kelly, & Butterfield, 2006).
The success of any treatment protocol depends on how well it is implemented. This in turn depends on the quality of training provided by the clinical psychologist. Training parents, teachers, and staff to implement treatment protocols can be accomplished using a combination of verbal and written explanation, demonstration, and practice with performance feedback (Wood, Luiselli, & Harchik, 2007). Training on protocol implementation should continue until a high level of treatment fidelity is achieved.
Treatment protocols need to be evaluated to demonstrate their effects on target behaviors. This type of evaluation requires competence in obtaining objective, reliable, and valid data on performance (e.g., frequency of target behaviors) (Kennedy, 2005). Repeated measures of performance in combination with an appropriate single-case experimental design will enable the clinician to evaluate the effects of the treatment program in ways that can demonstrate a functional relation between treatment and positive changes in target behaviors (Barlow & Hersen, 1984).
Evaluation data of this type will often reveal that the treatment program is not having the desired effects. Even well established interventions that are carefully and faithfully implemented, as per the treatment protocol, may fail to produce sufficient treatment gains. Clinicians therefore should be able to quickly identify when the protocol is not working and analyze the nature of any such problems so that appropriate steps can be taken to troubleshoot the floundering program. Data collection for evaluation purposes needs to be frequent, repeated, and ongoing. In some cases, the analysis will reveal technical aspects of the procedures (e.g., the rate of reinforcement) that require modification. In other cases, however, one may need to recognize that continued use of the protocol is unlikely to be helpful.
45.6.5 3.6.5 Ethical Practice
Understanding of the concepts of informed consent, confidentiality, breach of confidence, access to information, and reporting laws and how to apply these concepts in practice are basic competencies required of all clinical psychologists (Sales, DeKraai, Hall, & Duvall, 2008). Application of these concepts can present certain unique ethical challenges for clinical practice in mental retardation. One such challenge arises from the fact that individuals with mental retardation are often unable to fully comprehend and hence provide informed consent to assessment and treatment. This raises problems in relation to gaining assent and promoting self-determination in relation to treatment participation (Baer, 1998). Although this area will continue to present challenges, guidelines for obtaining informed consent exist that can assist clinicians in protecting individual’s rights and self-determination (Iacono & Murray, 2003).
Another challenge arises from the fact that a diagnosis of mental retardation can have lifelong impact for the individual’s life course, opportunities, and self-esteem. One potentially detrimental effect is the self-fulfilling prophesy of lowered expectations leading to fewer learning opportunities for learning and less academic achievement (Eikeseth & Lovaas, 1992). In light of this, there may be pressure to avoid or alter the diagnosis to something that might be seen as less stigmatizing. Ethically, clinicians must resist any such pressure and ensure that an accurate diagnosis is followed by appropriate treatment. The diagnosis of mental retardation must be based solely on objective, reliable, and valid assessment data, not on any social or political factors.
A final issue that touches on ethical issues relates to the disclosure of the diagnosis of mental retardation. It is important to realize that when a child is referred for psychological assessment, the parents may be unprepared for a diagnosis of mental retardation (Blacher, Feinfield, & Kraemer, 2007). When a diagnosis of mental retardation is appropriate to make based on objective, reliable, and valid assessment data, then the results must be fully and openly disclosed to the parents. This news can be understandably disturbing to parents, and so it must be conveyed with empathy, but not false hope. Parents deserve and appreciate clear and accurate information about their child’s diagnosis and what it means for family and child functioning. When informing parents that their child meets the definition for a diagnosis of mental retardation, clinicians should be prepared to offer sound, evidence-based advice about etiology, prognosis, and treatment options. Provision of parent-friendly information can be useful for this purpose, but many parents may need time to adjust to the diagnosis before this type of supplementary information is appreciated.
45.7 3.7 Expert Competencies of the Clinician
Enhancing the quality of life for children and adolescents with mental retardation and their families often requires ongoing assessment and treatment. This reflects the fact that mental retardation is pervasive and chronic, affecting multiple areas of functioning throughout the lifespan. Providing ongoing support will often require a level of expertise that moves beyond the basic competencies considered in the previous section of this chapter. Working with children and adolescents from diverse cultural backgrounds, for example, requires expertise in culturally sensitive practices. Similarly, expert competence is required when children present with severe excess behavior or profound and multiple impairments. The demands that arise in relation to each of the areas complicate the provision of ongoing assessment and treatment and are therefore likely to require greater clinical expertise.
45.7.1 3.7.1 Culturally Sensitive Practice
In many countries, including the United States, clinicians are increasingly likely to be involved in supporting children and families from diverse backgrounds. Dana (2005) noted that clinicians require expertise in supporting minority, indigenous, immigrant, and refugee families, for example. Vandenberghe (2008) described how the lack of cultural sensitivity could lead to misunderstandings that may negatively impact clinical practice. For example, behaviors interpreted as pathological from the clinician’s perspective could in fact be typical and acceptable within the child’s family or culture.
Providing effective clinical services to diverse families does not necessarily require that the clinician and client share the same culture (Vandenberghe, 2008). It is important, however, for the clinician to gain an understanding of various cultures and strive for a more culturally sensitive approach to practice. Ideally, this should occur before progressing beyond the initial referral stage.
Understanding and sensitivity can be gained by consulting with stakeholders from the relevant community or culture. For example, assessment of intellectual or adaptive behavior functioning for a child from an immigrant family may require the clinician to work through an interpreter, who understands both the family’s language and cultural values. This will require the clinician to gain competence in working collaboratively with individuals from other backgrounds and cultures.
Effective clinical work with diverse families involves more than simply working collaboratively. With respect to diagnostic assessment, for example, it must be remembered that certain IQ tests and adaptive behavior scales might not necessarily be universally applicable. A clinician must therefore gain skills in evaluating the cultural appropriateness of instruments before using these to assess a child’s intellectual or adaptive behavior functioning and identifying treatment priorities.
Cultural norms may also influence acceptable treatment practices. Parents with certain cultural or religious beliefs, for example, may be reluctant to implement a recommended evidence-based treatment. In some cases, this may create an ethical dilemma for the clinician. A family might, for example, want the clinician to support them in using unproven or ineffective assessments or treatments. In such cases, the clinician must have the expertise to make judgments about whether or not accommodation of the family’s wishes would compromise ethical standards.
Along these lines, Vandenberghe (2008) described four aspects of maintaining ethical standards when working with culturally diverse families: These include (a) being aware of cultural differences (and we would add being aware of cultural similarities), (b) knowing about the child’s culture, (c) being able to distinguish culturally acceptable patterns of behavior from the deficits, delays, or excesses associated with mental retardation, and (d) being competent in taking culture into account during the assessment and treatment process.
45.7.2 3.7.2 Treatment of Severe Excess Behavior
Clinical psychologists working in the field of mental retardation will often receive referrals to treat excess or problem behavior in children and adolescents with mental retardation. The general approach of identifying the variables that maintain the excess behavior and then teaching a relevant replacement behavior is usually sufficient for treating the more common types of excess behaviors (e.g., tantrums, noncompliance, disruption, and stereotyped movements) seen in children and adolescents with mental retardation (Sigafoos et al., 2003). Implementing this general approach requires basic competence in behavioral assessment and intervention. Matson et al. (2008) described the basics of this general assessment to intervention model for the treatment of excess behavior in individuals with mental retardation. To further facilitate this process, clinicians can draw upon a range of well-established and manualized assessment and intervention procedures that have demonstrated efficacy in the treatment of excess behavior in children and adolescents with mental retardation (e.g., Carr et al., 1994; Durand, 1990; Sanders et al., 2004).
However, successful treatment of more severe forms of excess behavior (e.g., intense aggression, extreme self-injury, and criminal behavior) will often require a higher degree of clinical expertise than is required for implementing the basic assessment to intervention process represented in these manuals. While effective treatments for severe excess behaviors are also behaviorally based (Foxx, 2001), the design, implementation, and evaluation of such treatments is complicated by the very real potential for serious harm and consequent need for immediate and lasting response suppression (Foxx, 1996, 2003, 2005). Expert competencies are therefore required to assess the risk that severe excess behavior poses to the child and others and to determine when more intrusive treatments are indicated.
18.104.22.168 22.214.171.124 Risk Assessment
The main purpose of undertaking a risk assessment is to prevent harm (McEvoy & McGuire, 2007). One way to prevent harm from severe excess behavior is to provide effective behavioral treatment. However, behavioral treatments are rarely immediately effective in preventing or eliminating severe excess behavior. Thus, clinicians must consider the risks that the excess behavior represents to the child and others in treatment planning.
Risk needs to be considered in terms of the potential for injury, damage, and other negative effects (e.g., arrest, school suspension, and loss of employment). The form of the behavior does not always equate to the degree of risk or potential for harm. Physical attacks on others for example, could pose only a moderate risk of harm if these attacks have been rare and easily preempted. Frequent and persistent swearing at strangers in the community, on the other hand, might be viewed as having serious potential for harm, including restricting a person’s access to the community. McEvoy and McGuire (2007) provided a list of questions that could be adapted to identify and assess the potential for harm from excess behavior (e.g., What could happen if the behavior occurs? Who is at risk if the behavior occurs? Under what conditions is the behavior likely to occur?). Other researchers have developed scales for assessing risk (Lindsey et al., 2008). Competence in the use of such risk assessment approaches is required when individuals present with severe excess behavior.
A risk assessment is also necessary before undertaking a functional assessment to identify the variables that evoke and maintain severe excess behavior. Because some such assessments expose the individual to analog conditions that could provoke excess behavior (Rojahn, Whittaker, Hoch, & Gonzales, 2007), it is important to determine whether the information that can be gained from direct assessment methods outweighs the risk that might arise if excess behavior occurs during the assessment. Clinicians can minimize or prevent this risk by using briefer versions of analog assessments or by using more indirect assessment protocols (Matson et al., 2008).
126.96.36.199 188.8.131.52 Intrusive Treatments
In some cases, risks associated with excess behavior may warrant the use of more intrusive or restrictive treatments to prevent and reduce severe excess behavior. Certain types of treatments – including the use of protective equipment, physical restraint, or response-contingent aversive stimulation – have been defined as intrusive and their use is controversial (Repp & Singh, 1990). Many jurisdictions have restricted the use of some such procedures in the treatment of individuals with mental retardation (Sherman, 1991).
However, use of empirically supported intrusive procedures may be justified when the risk is high and when less intrusive treatments have failed (Didden, Duker, & Korzilius, 1997; Duker & Seys, 1996; Foxx, 2005). Obviously clinicians intending to use intrusive treatments must be prepared to justify this decision with evidence, ensure compliance with legal and ethical guidelines, and develop appropriate safeguards. When these conditions can be met, clinicians must gain the necessary expertise to use the procedures prior to implementation. During treatment implementation, clinicians will have to maintain a high degree of oversight and regularly monitor the effects and side effects of treatment (Duker & Van den Munckhof, 2007). The intensity of the required oversight can be demanding and must be considered in the decision to accept referrals for the treatment of severe behavioral excesses.
45.7.3 3.7.3 Profound and Multiple Impairments
Developing treatments to promote greater adaptive behavior functioning is one way by which clinical psychologists enhance the quality of life for children and adolescents with mental retardation and their families. The general approach is to identify the child’s adaptive behavior deficits and then directly teach new adaptive skills to address these deficits (Lovaas, 2003). For example, children with mental retardation have been taught a range of adaptive behaviors (e.g., feeding, dressing, and toileting) using task analysis, response prompting, prompt fading, and reinforcement (Duker et al., 2004). Implementing this general approach requires basic competence in undertaking adaptive behavior assessments and implementing evidence-based instructional strategies.
However, this general approach may have limited efficacy for individuals with profound mental retardation and coexisting sensory, physical, or health impairments (Smith, Klevstrand, & Lovaas, 1995). The challenge for clinicians then is how to enhance the quality of life for children and adolescents with profound and multiple disabilities. Addressing this challenge would seem to require a higher level of expertise than is usually required for teaching adaptive skills to children and adolescents with fewer and less severe impairments.
Bailey (1981) noted that clinical practice for individuals with profound, multiple disabilities may require a shift in emphasis from adaptive skill training to stimulation programming. Along these lines, Lancioni and his colleagues have demonstrated how clinicians can make use of assistive technology and operant conditioning principles to provide stimulation while at the same time promoting more active engagement and movement in persons with profound and multiple disabilities (Lancioni et al., 2008a, b). For example, instead of merely exposing the individual to preferred sources of stimulation, a microswitch program may enable the person to obtain stimulation in a more active, self-directed manner (Lancioni et al., 2007a).
Promoting more active engagement is one way to enhance the quality of life for children and adolescents with profound mental retardation and coexisting conditions (Lancioni et al., 2007b). Doing so effectively requires expert competence in an area of practice that has been relatively neglected (Bruzek & Kennedy, 2007). Consequently, clinicians interested in this and other specialized populations described in this section will benefit from adopting strategies to facilitate their transition from basic competence to expert clinician.
45.8 3.8 Transition from Basic Competence to Expert Clinician
The competency-based movement in professional psychology focuses on identifying the domains and levels of required competence (Hatcher & Lassiter, 2007). As noted by Kaslow, Dunn, and Smith (2008), the domains and levels of required competence vary across practice settings and client populations. In the field of mental retardation, the transition from basic competence to expert clinician can be viewed as one way to extend the limits of competence to a wider range of issues. Gaining expert competence in clinical interviewing to assess adaptive behavior, for example, can extend the limits of practice to include more culturally diverse families, whereas greater expertise in behavioral intervention may enable clinicians to more effectively treat individuals with severe behavioral excesses.
The transition from basic competence to expert clinician might be viewed as an ongoing development process (Kaslow et al., 2008; Lichtenberg et al., 2007). That is, there is no point at which a clinician achieves complete expertise. Rather, clinicians should continually seek out new knowledge and professional development opportunities to advance their skills. This developmental view recognizes the fact that mental retardation is a vibrant and evolving area of specialization, where new evidence is continually generating new and more effective practices.
In line with this developmental view, clinicians may benefit from developing a planned and systematic approach for gaining relevant new knowledge and clinical skills. Following successful completion of a clinical training program with practicum and internship experiences in the field of mental retardation, approaches for gaining more expert knowledge and clinical skills include: (a) systematic literature reviews, (b) mentoring, and (c) participation in professional development activities. A planned systematic approach to knowledge acquisition and skill development may help to ensure that clinicians identify relevant new knowledge and skills.
45.8.1 3.8.1 Systematic Literature Reviews
Keeping abreast of the latest and best research evidence is an essential component of evidence-based practice. Clinicians should therefore develop the habit of systematically searching the literature on a regular basis. The purpose of undertaking regular systematic literature searches is to identify high-quality studies relevant to a particular case or clinical practice. Indeed, an important initial step in developing any treatment plan – be it to improve social skills, teach language, or reduce disruptive behavior – is to identify well-established interventions that have been successfully used with similar cases. When relevant studies are identified, clinicians should have the basic competence to appraise the certainty of the evidence and eliminate from consideration any approaches that lack empirical support. When use of a particular approach is well established by a sufficient amount of high quality research, expert clinicians are able to incorporate the evidence-based procedures into their professional practice to improve quality of life outcomes for individuals with mental retardation and their families.
One practical and efficient way to search the literature is through the use of electronic databases, such as PsychINFO and MEDLINE. A PsychINFO search using mental retardation and assessment (or intervention) as keywords and covering only 2007, for example, yielded 187 publications. Clearly, there is a large amount of published literature that could be drawn upon to inform clinical practice. The need to sift through the huge volume of literature highlights the critical need for expertise in the critical appraisal of available research evidence.
At a more advanced level of competence, the transition to expert clinician is marked by the ability to identify emerging trends in the scientific literature and contribute to this literature in line with the scientist–practitioner model of clinical practice (Tryon, 2008). Major advances in identifying genetic syndromes and behavioral phenotypes associated with mental retardation (Oliver et al., 2007), for example, would seem to hold considerable promise for clinical practice. Translating emerging genetic and biomedical discoveries into more effective treatments is likely to require a high level of competence supported by opportunities for interdisciplinary collaboration.
45.8.2 3.8.2 Mentored Experiences
Mentoring in this context refers to seeking out a more experienced colleague for professional guidance, support, and advanced training. Two examples of such experiences include: (a) working collaboratively and constructively with a more experienced team of colleagues, and (b) entering into a more formal training arrangement with experienced colleagues. The purpose of seeking such mentoring experiences is to develop expert levels of competence in one or more specialized clinical skills.
Developing expert competence is more likely when the mentoring experience includes observation of the expert followed by opportunities to practice the skill while receiving performance-based feedback (Lichtenberg et al., 2007). Fluency in clinical skills will often require repeated opportunities to observe the expert and practice the skill while receiving feedback.
Unfortunately such mentoring experiences may be difficult for practicing clinicians to arrange. Difficulties can arise from the fact that there may be a shortage of experts who are willing and able to serve in a mentoring capacity. In addition, many professionals work on an individual basis in their own clinical practice (Hersen, 2004). These clinicians are likely to be isolated from senior colleagues and thus have few available mentors. In such settings, the clinician can gain new knowledge from handbooks and treatment manuals written by recognized experts (e.g., Hersen & Gross, 2008; Hersen & Reitman, 2008; Matson, 2007b) and undertake self-directed practice to gain fluency.
45.8.3 3.8.3 Professional Development
Professional development in this context refers to participation in formal accredited training programs. This may involve accredited university courses or training run by professional organizations, such as the American Psychological Association. The aim of this training is to acquire new knowledge and skills relevant to clinical practice.
This type of professional development training usually occurs over a brief period of time (e.g., a one-semester evening course or a 1–2 day workshop). The evidence for the effectiveness of such training is mixed (Miline, Keegan, Westerman, & Dudley, 2000; Miller, Yahne, Moyers, Martinez, & Pirritano, 2004) and probably depends as much on the quality of the material and presenter as it does on the commitment of the trainee to develop fluency in newly acquired knowledge and skills. There appears to be no shortage of opportunities for professional development training in the field of mental retardation.
Another form of professional development is to become actively involved in relevant professional organizations, such as Division 33 (Intellectual and Developmental Disabilities) of the American Psychological Association. Such organizations provide opportunities to network with experts and access targeted professional development opportunities.
45.9 3.9 Summary
Enhancing the quality of life for individuals and families is the overall objective of clinical psychology practice in mental retardation. To achieve this objective, a range of competencies, such as those outlined in this chapter, is required. The present chapter has hopefully contributed to the competency-based movement in professional psychology by articulating some of the basic and expert competencies that will enable clinical psychologists to be more successful in enhancing quality of life outcomes for children and adolescents with mental retardation and their families.
Because of the heterogeneous nature of mental retardation, effective clinical practice in the field requires basic and expert levels of competence. There are numerous causes for mental retardation and varying symptom presentation. For example, individuals with mental retardation can present with mild mental retardation and require only episodic support or with profound mental retardation and coexisting physical and sensory impairments requiring life-sustaining support. The expert clinician can recognize, assess, and treat mental retardation in all its various manifestations.
Mental retardation is pervasive and chronic. Because of this, many individuals with mental retardation require ongoing support across a range of settings (e.g., clinic, home, school, community, and vocational settings). A competent clinician must therefore be able to work from a lifespan perspective and coordinate services across multiple settings.
The two main areas of clinical practice in mental retardation are (a) diagnostic assessment and (b) evidence-based intervention to promote improved adaptive behavior functioning. To this end, clinicians can draw upon a range of evidence-based assessment and treatment approaches. This is a challenging task, as the heterogeneity of mental retardation means that clinicians will often have to adapt assessment and intervention strategies to suit the unique characteristics of the individual and context. Making effective adaptations of this sort requires a thorough understanding of the foundational principles that underlie evidence-based assessment and treatment approaches (Linscheid, 1999).
The transition from basic competence to expert clinician can expand the limits of one’s practice to a wider range of clinical problems and issues. Expert competences are certainly needed to (a) work effectively with diverse families, (b) treat severe excess behavior, and (c) enhance participation of individuals with profound, multiple disabilities. To make this transition, a conscientious effort to keep informed of current literature and develop advanced clinical skills through mentoring and professional development is required. Professionalism demands that clinicians strive to make the transition from basic competence to expert. Clinicians can be confident that their efforts to gain expertise in this challenging, but rewarding, field can greatly enhance the quality of life of individuals with mental retardation and their families.