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This guideline document is an official statement of the American Speech-Language-Hearing Association (ASHA). It was developed by ASHA's Ad Hoc Committee to Review/Revise Current Practice and Policy Documents Related to Mental Retardation/Developmental Disabilities. Members of the Committee included Howard Goldstein (chair), Kevin Cole, Philip S. Dale, Jon F. Miller, Patricia A. Prelock, Krista M. Wilkinson, and Diane R. Paul (ex officio). Celia Hooper, ASHA vice president for professional practices in speech-language pathology (2003–2005), served as the monitoring officer. The ASHA Scope of Practice (ASHA, 2001) states that the practice of speech-language pathology includes providing services for persons with mental retardation/developmental disabilities with communication needs. The ASHA Preferred Practice Patterns (ASHA, 2004) are statements that define universally applicable characteristics of practice. The guidelines within this document fulfill the need for more specific procedures and protocols for serving individuals with mental retardation/developmental disabilities across all settings. It is required that individuals who practice independently in this area hold the Certificate of Clinical Competence in Speech-Language Pathology and abide by the ASHA Code of Ethics (ASHA, 2003b), including Principle of Ethics II, Rule B, which states “Individuals shall engage in only those aspects of the profession that are within their competence, considering their level of education, training, and experience.” This document was approved by the Speech-Language Pathology/Speech-Language Science Assembly of ASHA's Legislative Council (SLP/SLS 3-2005) on April 2, 2005.
This document provides guidelines for implementing the American Speech-Language-Hearing Association (ASHA) position statement on the roles and responsibilities of speech-language pathologists (SLPs) serving the communication needs of persons with mental retardation/developmental disabilities (MR/DD; ASHA, 2005-c). A historical perspective is provided to highlight recommended practices for SLPs involved in the diagnostic and eligibility decisions, teaming and collaboration, assessment and goal selection, and intervention for individuals with MR/DD. This document is meant to help guide SLPs' decision making. It is based on available empirical evidence. However, SLPs recognize that when empirical evidence is lacking, extrapolations from evidence with other populations and applications of principles stemming from theoretical models, societal norms, and government mandates and regulations also are relevant for decision making. Recommended practices are expected to change as new evidence emerges. Within a collaborative context, the SLP should be able to articulate both the principles and the levels of evidence that undergird their service delivery practices. SLPs serve as an integral part of a team, including individuals with MR/DD and their families, that is responsible for formulating and implementing service delivery plans that meet the unique communication needs of the client. Knowledge and skills needed for implementing these guidelines are provided in a companion document (ASHA, 2005-a).
Recommended terminology, definitions, and diagnostic criteria relating to MR/DD have evolved, reflecting and supporting the broader legal and social gains made by individuals with such disabilities, their families, and other stakeholders. Although SLPs do not diagnose mental retardation themselves, they play a key role in assessing and enhancing adaptive communication functioning. This section (a) compares the philosophical approaches and operational criteria of three principal systems for diagnosing and classifying mental retardation, (b) discusses the construct of mental retardation as it relates to developmental disabilities more broadly, and (c) describes the implications of diagnostic and classification systems for SLPs who serve individuals with such disabilities.
Table 1 contrasts the similarities and differences in the definition and classification of mental retardation across the three principal frameworks used in the United States. Two of the frameworks have been developed by organizations within the United States: the American Psychiatric Association's (2000) Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition-Text Revision (DSM-IV-TR) and the American Association on Mental Retardation's (AAMR; 2002) system of definition and classification. The third is the internationally recognized framework from the World Health Organization (WHO; www3.who.int/icf). Relevant to MR/DD are two documents, the International Classification of Diseases and Related Health Problems-Tenth Revision (ICD-10; WHO, 1999) and the International Classification of Functioning, Disability and Health (ICF; WHO, 2001). Whereas the ICD-10 lays out the diagnostic criteria specific to MR/DD, the ICF describes human function and disability and the consequences of a disease or health condition more generally (WHO, 2001).
Diagnosis. All three frameworks share two diagnostic criteria: the presence of significant intellectual limitations and onset prior to age 18 years. Additionally, both the DSM-IV-TR and the AAMR definition specify a third criterion: presence of significant limitations in adaptive functioning. As was the case for earlier diagnostic systems within the United States, this third criterion is not present in the ICD-10 from the WHO. The emphasis on considering limitations in adaptive functioning as a criterion for diagnosis represents a shift in philosophy and practice. Many adaptive skills require communication competence (for instance, using the telephone), and speech and language deficits likely have a significant impact on performance. It is therefore essential for SLPs to remain abreast of the frameworks within which individuals with MR/DD are diagnosed.
Classification. Once a diagnosis of mental retardation is established, there is often classification into subgroups. Perhaps the most familiar method for classifying subgroups is based on level of IQ deficit (mild/moderate/severe/profound). Both the DSM-IV-TR and the ICD-10 incorporate IQ-based classification. This system also was recommended by AAMR until 1992. At that time, the system was changed to emphasize the different levels of support that individuals need to perform at their maximum ability (i.e., requiring intermittent, limited, extensive, or pervasive support). This shift has been maintained in the 2002 definition, with an elaboration of their framework for defining levels of support to achieve maximum functioning.
Characterization beyond identification/classification. The AAMR and the WHO frameworks also consider other dimensions that affect individual functioning. The AAMR model articulates five dimensions. In addition to the diagnostic factors of (I) intellectual abilities and (II) adaptive functioning, the AAMR recommends considering (III) participation, interactions, and social roles; (IV) health; and (V) contexts in which the individual is functioning. All five of these dimensions are mediated by the supports and resources available to the individual.
The ICF framework shares many of its basic characteristics with the AAMR approach. The structure of the ICF defines the dimensions of disability (impairments, activity/participation) as well as the contextual factors (environmental and personal) that have an impact on the characteristics, experiences, and circumstances of individuals with disabilities, creating a more meaningful picture of an individual with a disability (WHO, 1999, 2001). At the impairment level, body functions (physiological or psychological) and structures (anatomic parts) are considered. At the person or activity level, the individual's ability to perform a task or action is defined. The societal or participation level identifies an individual's ability to fully participate in a life situation or restrictions in being able to do so. Capacity and performance qualifiers are used to modify the activity and participation components of the ICF. Capacity qualifiers describe individuals' ability to carry out a task in a standardized manner, whereas performance qualifiers describe what individuals currently do in the environments in which they live. The contextual factors considered are both environmental (societal attitudes, cultural norms, laws, educational systems, or architectural considerations) and personal (age, gender, other health conditions, past and current experiences, education, fitness, lifestyle, habits, and coping styles).
In PL 106-402 (2000), the U.S. government defined developmental disabilities as a severe, chronic disability of an individual 5 years of age or older that-
is attributable to mental or physical impairment or a combination of mental and physical impairments;
is manifested before the individual attains age 22 years;
is likely to continue indefinitely;
results in substantial functional limitations in three or more of the following areas of life activity: (a) self care, (b) receptive and expressive language, (c) learning, (d) mobility, (e) self-direction, (f) capacity for independent learning, and (g) economic self-sufficiency; and
reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or of extended duration and are individually planned and coordinated.
Mental retardation is generally considered to be a subset of the larger category of developmental disabilities (Batshaw, 2002). The term developmental delay is commonly used as a temporary diagnosis in young children at risk for developmental disabilities. It indicates a failure to achieve age-appropriate developmental milestones (Petersen, Kube, & Palmer, 1998). The presence of the intellectual limitations is the key difference between the definition of mental retardation and the definition of developmental disability. Lifelong, early-onset conditions that result in substantial functional limitations, but not necessarily concomitant intellectual limitations, include cerebral palsy or autism (although many individuals with these conditions do, in fact, have mental retardation). Individuals with these diagnoses who have age-level cognitive skills would be considered to have developmental disabilities without mental retardation.
The focus on functional abilities/disabilities implicit in both the AAMR (for mental retardation) and the ICF frameworks (for disabilities more generally) is consistent with evolving attitudes and insights concerning persons with developmental disabilities. The implementation of these models remains an ongoing process and requires a set of specific knowledge and skills (ASHA, in press-a). Several issues are of importance to SLPs.
Adaptive skills. Limitations in adaptive functioning in specific skill areas are a necessary criterion for diagnosis under the AAMR and DSM-IV-TR definitions. SLPs should be aware that many of the adaptive skill areas have direct roots in communication ability. For instance, among the skills listed in AAMR as examples of “conceptual skills” are receptive and expressive language, reading, and writing. “Social skills” include interpersonal skills, rule-following, and following laws. “Practical skills” include using the telephone and occupational skills (see AAMR, 2002, p. 82). Given the reliance of many of these skills on communication abilities, deficits in communication will have a significant impact on adaptive behavior measures. Clearly, the role of the SLP takes on increased importance with the assessment and intervention communication sharing so much in common with the AAMR conceptualization of adaptive functioning.
Adoption of a support-based approach. The 2002 AAMR definition and classification system evolved from the 1992 version, in which many of the major structural shifts were introduced. It responds in part to resistance by service providers and others to the removal of the levels of IQ as a classification tool, to an inadequate definition of what was meant by “levels of support,” and to the lack of guidance about how to assess adaptive behavior and levels of support (see AAMR, 2002, p. 30 for greater detail; MacMillan, Gresham, & Siperstein, 1993, 1995). Further operationalization of supports is provided in a standardized scale for measuring support needs (the Supports Intensity Scale; see Thompson et al., 2002). This should allow clinicians and service providers who adopt the AAMR approach a standardized means of assessment. SLPs will have an important role in evaluating how this new instrument incorporates communication skills and whether it allows for development of individualized target goals that can minimize support needs.
Consideration of dimensions affecting individual functioning. Because of its emphasis on the multidimensional influences on functioning, the ICF is often used in the United States. The revisions in the 2002 AAMR definition that are consistent with the ICF may respond to some of the initial problems in adopting the AAMR classification system for service delivery. SLPs should be aware of the shared emphasis within the AAMR and the WHO's ICF on dimensions other than intellectual and adaptive functioning. SLPs play an important role in identifying the many factors that affect functioning, and in working to influence conditions that maximize functioning. For instance, an appreciation of contextual factors broadens the scope of traditional assessment toward a more holistic and dynamic view of the individual's experience. Families, individuals with disabilities, and other professionals provide valuable sources of information across all dimensions of the ICF framework for SLPs to consider in their assessment of and intervention with persons with MR/DD.
Use of alternative labels. Another area on which there is widespread discussion concerns the appropriateness of our terminology, person-first language, and the potential use of alternative labels. The use of the words mental retardation itself has come under fire over the past decade, with some groups advocating for shifting away from this usage altogether. In fact, the AAMR itself recently debated whether to retain the term in its name (e.g., Goode, 2002; Turnbull, Turnbull, Warren, Eidelman, & Marchand, 2002; Walsh, 2002; Wolfensburger, 2002). The name of this organization had previously been changed from the American Association on Mental Deficiency, because it was deemed inappropriate to focus on weaknesses. Ultimately, the organization chose to keep the name AAMR. Similarly, TASH has dropped reference to severe handicaps in its official name. When TASH was founded in 1974, it was called the American Association for the Education of the Severely/Profoundly Handicapped and went by the acronym AAESPH. Six years later the name was changed to the Association for the Severely Handicapped and in 1983 it was changed to the Association for Persons with Severe Handicaps. In 1995, the organization voted to maintain the TASH acronym because it was so widely recognized but to stop using the full name of the organization, as it did not reflect current values and directions. Other organizations making similar changes include Arc and RESNA. Many organizations have well-developed Web sites that provide further information, including www.aamr.org (AAMR), www.thearc.org (Arc; which has a “related links” section with links to many other important sites: www.thearc.org/relatedlinks.htm), www.cdc.gov/ncbddd/dd/default.htm (Centers for Disease Control and Prevention), www.tash.org (TASH), www.resna.org (RESNA), and www.ucp.org (United Cerebral Palsy).
The controversy over labels means that some professionals, service providers, and parents may prefer an alternative term to mental retardation. However, there are no current alternative labels that clearly correspond to the state of functioning in the AAMR definition. That is, good descriptors for various general intellectual limitations accompanied by varying adaptive limitations have not been formulated. For instance, the term learning disability is most typically reserved for students with specific deficits in one area but that are not generalized across all intellectual and adaptive areas.
The same problem applies within the area of communication disorders when the notion of specific language impairment (SLI) is considered. Some individuals with MR/DD show a profile of language impairment that is more severe than would be predicted on the basis of measured cognitive level (Miller, 1988). Would such individuals be considered to have a “specific language impairment”? Historically, speech-language pathology has viewed SLI and language delay due to cognitive delay as distinct in causality, response to intervention, and, to a lesser degree, presenting characteristics. Because of adherence to this theoretical construct, we have not yet extensively examined the degree to which characteristics of language impairment may be shared among children with differing cognitive profiles. Future research that includes children with language delays across a spectrum of cognitive performance may expand our understanding of mechanisms of language development and disorder; research also may enhance our interventions for children with SLI profiles as well as children with language delays associated with delayed cognitive skills.
Qualification for services. A final, unresolved issue in defining the boundaries of MR/DD and appropriate services arises from the mandated shift to a functional emphasis in PL 106-402. Some organizations (for instance, the Arc) fear that individuals who have mild limitations in both adaptive and intellectual functioning may no longer qualify for services under the PL 106-402 requirement of “substantial” functional limitations. It is too early to determine if such an outcome will occur; however, SLPs have an important role to play in documenting the functional effects that even a “mild” disability may have for individuals with MR/DD.
Discussion and controversy about labels for children with developmental disabilities and the appropriateness of our terminology may take years to resolve. Nevertheless, it is important that SLPs engage in family-centered practice and are sensitive to the ways in which individual clients and families respond to specific labels. They work with the family to respond to the unique skills and needs of each person and to obtain access to the most appropriate services. In those cases where a specific label is necessary to qualify for appropriate services, the SLP's role may be to advocate for individuals with MR/DD and to counsel individuals and families about current laws, policies, and regulations.
Individuals with MR/DD of all ages are eligible for SLP services when enhancement of communication skills is needed to function effectively in their everyday lives, regardless of age or cognitive level relative to communication abilities. SLPs do not withhold services based on a priori criteria that preclude consideration of individual needs, preferences, and priorities for communication. Some commonly used “eligibility” criteria have been used to deny access to services, despite the absence of scientific evidence for their appropriateness, and indeed in some cases, contrary to evidence that they are specifically inappropriate (Brady & McLean, 2000; Chapman, 1997; Iacono, Carter, & Hook, 1998; Kangas & Lloyd, 1988; McLean, Brady, & McLean, 1996; National Joint Committee for the Communication of Persons with Severe Disabilities [NJC], 2003a, 2003b; Reichle & Yoder, 1985; Romski & Sevcik, 1996; Romski, Sevcik, & Pate, 1988). These criteria include (a) discrepancies between cognitive and communication functioning, (b) chronological age, (c) diagnosis, (d) absence of cognitive or other skills purported to be prerequisites, (e) failure to benefit from previous communication services and supports, and (f) restrictive interpretations of educational, vocational, and/or medical necessity. Criterion (a), often referred to as “cognitive referencing,” is of special importance due to its widespread implementation (ASHA, 2000; Casby, 1992; Cole, Dale, & Mills, 1990; Cole & Fey, 1996; Notari, Cole, & Mills, 1992). In this framework, children with mental retardation should not receive SLP services if their measured language skills are commensurate with measured cognitive level. As discussed in the accompanying technical report (ASHA, in press-b), research suggests that cognitive referencing is not an appropriate criterion for eligibility decisions. For example, several studies have shown that language intervention benefits children with MR/DD even when no language-cognition discrepancy exists (Cole, Coggins, & Vanderstoep, 1999; Cole, Mills, & Kelly, 1994). These inappropriate substantive criteria for excluding individuals from services must be addressed in part by educating decision-makers, that is, through advocacy efforts (ASHA, 1996, 1999, 2000, 2004a).
It is also worthwhile expanding briefly on criterion (d), which states that clients cannot be denied services on the basis of an “absence of cognitive or other skills purported to be prerequisites.” This criterion should not be interpreted as recommending the use of one specific type or mode of service. For instance, some individuals with MR/DD may be good candidates for immediate introduction of symbolic communication goals that target acquisition and use of words or AAC symbols. However, for some clients with extremely limited functional communication, other short-term goals may be equally appropriate. Potential targets for services might include broader communication goals such as turn-taking games, social participation, or causality, many of which involve nonsymbolic modes like gesture. Criterion (d) states that no individuals should be excluded from services; rather, services should be targeted to the appropriate skill set for that client.
SLPs do not provide assessment and intervention services in isolation. Current law and recommended practices require a collaborative process that involves a multifaceted team including families, caregivers, persons with disabilities, and professionals. These teams establish and coordinate services that are family-centered, culturally appropriate, comprehensive, and compassionate, and that produce meaningful life outcomes. Team approaches are considered best practice for serving individuals with special needs and their families (Bagnato & Neisworth, 1991; McGonigel, Woodruff, & Roszmann-Millican, 1994). Models of teaming require varying degrees of collaboration and engage participants in the establishment of a joint purpose, shared goals, and an organized approach to implementing these goals. Three primary models of teaming (multidisciplinary, interdisciplinary, and transdisciplinary, as described below) have evolved in the care of children and adults with special needs and their families. Each of these models influences the approach to assessment and intervention, and the involvement of families (Brown, Thurman, & Pearl, 1993; Foley, 1990; Friend & Cook, 2000; Idol, Nevin, & Paolucci-Whitcomb, 1994). Awareness of the limitations of multidisciplinary teaming has led to a greater emphasis on sharing roles and perspectives. Although interdisciplinary teams are still prevalent, transdisciplinary teaming has characteristics that may be better suited to meeting the needs of persons with MR/DD and their families.
In multidisciplinary teams, practitioners work independently (Brown et al., 1993; Foley, 1990; Friend & Cook, 2000). Although they share their observations and findings with a team, group consensus is not required and the role of families is minimal. Multidisciplinary teams lack the holistic perspective needed in the provision of services for persons with MR/DD.
Interdisciplinary teams work cooperatively (Andrews, 1990; Brown et al., 1993; Foley, 1990; Guralnick, 2000; Orelove & Sobsey, 1996; Roberts-DeGennaro, 1996). In general, they provide discipline-specific assessment and intervention, although some cross-disciplinary activity may occur as team members collaborate in their delivery of service. They discuss their findings and activities to seek consensus and to develop goals and plans as a team. The family is involved at varying levels in the planning and implementation of assessment and intervention. Interdisciplinary models of teaming recognize that children and adults with complex health and educational needs require a comprehensive, holistic assessment and intervention model that cannot be managed by a single discipline (Guralinick, 2000; Prelock, Beatson, Bitner, Broder, & Ducker, 2003; Prelock, Beatson, Contompasis, & Bishop, 1999).
Transdisciplinary teams work collaboratively (Brown et al., 1993; McGonigel et al., 1994; Orelove & Sobsey, 1996; Woodruff & McGonigel, 1988). They pool their knowledge and skills, crossing discipline boundaries to provide effective services. Families are essential participants and their knowledge is sought and prioritized. Team members learn, plan, implement, evaluate, and make decisions together using a collaborative approach. Sharing a transdisciplinary philosophy maximizes opportunities for successful communication and interaction among team members and enables individuals with different backgrounds and expertise to define and creatively solve problems (Prelock, Miller, & Reed, 1995; Rainforth & York-Barr, 1997). Because of its emphasis on natural settings, functional goals, and family-centered and culturally appropriate practice, a transdisciplinary model of teaming is well suited to addressing the needs of persons with MR/DD.
SLPs recognize the role of families and culture in service provision. Priorities for family-centered care provision have shifted from an exclusive focus on the individual with special needs to one that incorporates the family and its links with the community. The core principles that guide the vision for family-centered care suggest people are treated with respect and dignity; providers communicate and share information with families in ways that are both useful and affirming; individuals with disabilities and their families are viewed as having strengths; and individuals, families, and providers collaborate in policy and program development, professional education, and service delivery (Institute for Family-Centered Care, 1997). Family-centered practices provide the support and resources families need to promote an individual's development and create meaningful learning opportunities (Dunst, 1999; Trivette & Dunst, 2000; Trivette, Dunst, & Hamby, 1996). Further, involving families in the care of their children results in improved health and developmental outcomes, enhanced learning for their children with special needs, and increased satisfaction among providers, as well as families (Eichner & Johnson, 2003; Horst, Werner, & Werner, 2000; Hutchfield, 1999; Letourneau & Elliot, 1996; Thies & McAllister, 2001).
Family-centered care is particularly suited to individuals with MR/DD and their families because of the complexity of their health and educational issues across settings and over time. Individuals with MR/DD demonstrate persistent adaptive impairments often requiring them to live at home or to have substantial family support. Recognition of the role of families in the development and learning of individuals with MR/DD requires SLPs to provide ongoing support and resources to ensure that individuals with MR/DD have a way to communicate with their families and that their families have a way to communicate with them (Cooley & McAllister, 1999; Dunst, Trivette, & Deal, 1994).
Implementing successful family-centered care requires several elements. Family-centered practitioners recognize the family as a constant in the child's life, collaborate with families in all aspects of service delivery, exchange complete and unbiased information, honor cultural diversity, understand families have different coping mechanisms, facilitate networking between families, ensure flexible and responsive services, and view individuals with special needs and their families from a strengths perspective (Shelton & Stepanek, 1994). Effective family-centered practitioners are technically competent and trustworthy and involve families in meaningful and culturally appropriate ways in the care and future planning of individuals with special needs (Dunst & Trivette, 1996; Mount & Zwernick, 1988; Prelock et al., 2003; Trivette & Dunst, 2000).
Families bring an important but different knowledge base about the strengths, challenges, and needs for the individual with MR/DD. They also identify valued life outcomes for their children (e.g., being safe and healthy, having a home, establishing meaningful relationships, having choices and control, and creating opportunities for meaningful activities across environments; Giangreco, 1990; Giangreco, Cloninger, Dennis, & Edelman, 1993; Giangreco, Cloninger, & Iverson, 1998). Ultimately, the decision rests with the family and the person with MR/DD, recognizing that the individual family circumstances and values are central to the decision-making process. Family-centered practice, however, is not without challenges for both SLPs and families. Differences in philosophies and approaches to assessment and intervention for persons with MR/DD can lead to dilemmas in the selection and implementation of practice strategies. SLPs who are committed to evaluating claims of effectiveness and recognize principles of best practice may be working with families who pursue approaches to programming and interventions with little evidence or who prefer not to follow a particular evidence-based approach. Family-centered SLPs are responsible for being informed about specific practices for persons with MR/DD and for being able to explain the advantages and disadvantages of these practices.
To involve persons with MR/DD and their families in service provision in meaningful ways, their cultural worldview needs to be understood and respected. Culture is the “shared implicit and explicit rules and traditions that express the beliefs, values, and goals of a group of people” (Kalyanpur & Harry, 1999, p. 3). Several “cultures” emerge when practitioners and persons with MR/DD and their families collaborate in service provision. Some of these include the practitioners' personal background, their discipline and organizational culture, and the family's culture. Sorting out cultural differences and finding common ground leads to culturally appropriate, family-centered practice (Prelock et al., 2003). The journey toward culturally appropriate practice follows a continuum from a view of cultural differences as a “pathology” to a recognition and understanding of differences that allows practitioners to integrate their expertise cross-culturally (U.S. Department of Health and Human Services, Maternal and Child Health Bureau, 1997).
Inherent in family-centered and culturally appropriate practice is the notion that every person has strengths. A strengths perspective encourages practitioners to consider an individual's or family's potential and dreams in service provision (Kisthardt, 1997; Saleebey, 1996, 1997). The challenges of individuals and their families are acknowledged, yet their strengths create a bridge to achieving their valued life outcomes. A strengths perspective emphasizes building trusting relationships with families in the natural environment with natural supports (Dunst & Trivette, 1996; Trivette & Dunst, 2000). Teams addressing the needs of persons with MR/DD emphasize family-centered, culturally appropriate practice when they include individuals with MR/DD and their families as partners and collaborators in the planning and implementation of assessment and intervention, recognize their unique worldview, and capitalize on their strengths.
Children with limited English proficiency (LEP) constitute a growing proportion of the U.S. school population. Kindler (2002) estimated that the incidence of children with LEP in PreK-12th grades was 10% of total enrollment for the 2000–2001 school year, but that more than 67% of these students were elementary students. Overall, the LEP population has increased by 105% between 1990 and 2000, more than 10% per year on average, compared with a 12% increase in total school enrollment for the same period. The top 10 languages of students with LEP in U.S. schools are Spanish, Vietnamese, Hmong, Cantonese, Korean, Haitian Creole, Arabic, Russian, Tagalog (Filipino), and Navajo (Kindler, 2002; see also the National Clearinghouse for English Language Acquisition & Language Instruction Educational Programs: www.ncela.gwu.edu/), but at least 384 languages have been reported by states.
The increased prevalence of LEP and the great variety of languages present serious challenges to the largely monolingual SLPs providing assessment and intervention services. Even if attempts to recruit bilingual individuals from the major language groups such as Spanish are successful, it will continue to be common for SLPs to assess communication in a language that they do not speak. SLPs must be aware of the potential for both over- and underidentification of children with LEP as developmentally delayed or mentally retarded. Further, many properties of the English that is assessed for diagnostic planning of intervention may be influenced by the learner's first language. ASHA has long recognized that increasing numbers of LEP students, speaking ever-increasing numbers of languages present challenges to SLPs, particularly those working in schools (see ASHA 1983, 1985, 1989, 1993, 1998a, 1998b, 2003b, 2004b). The number of LEP students with MR/DD varies among reports, but a percentage of disabilities among the general population can be calculated. According to the Centers for Disease Control and Prevention (2004), 17% of U.S. children under 18 years of age have a developmental disability. Based on an estimated 4,584,946 students with LEP in the United States in 2000–2001, we can estimate that about 779,441 (17%) students with LEP have a developmental disability and 91,699 (2%) have a serious developmental disability, such as mental retardation or cerebral palsy, and need special education services or supportive care.
After students with LEP acquire enough English to participate in classroom activities, with English as a Second Language services if available, children are referred to as English Language Learners (ELL). In 2000–2001, an estimated 3,493,118 children in the United States were classified as ELL. Thus, we estimate that this ELL population includes about 593,830 (17%) with a developmental disability and 69,862 (2%) with a serious developmental disability requiring special education services. Combining the LEP and ELL categories reveals an estimate of 8,078,164 school children learning English as a second language, with 1,373,271 having a developmental disability and 161,561 having a serious developmental disability.
With the increasing prevalence of clients with LEP, SLPs must be cognizant of effects on the assessment and management of persons with MR/DD. The ASHA position statement, Clinical Management of Communicatively Handicapped Minority Language Populations (ASHA, 1985) describes the continuum of language proficiency, strategies for professionals, and general guidelines for the use of interpreters. It emphasizes the importance of assessment in both languages for effective planning of intervention. It should be noted that different languages may be dominant in specific contexts (e.g., Lakota at home and English in school) and, thus, context is especially important in LEP situations. SLPs need to be aware of new assessment tools that are emerging, some for specific languages such as adaptations of the parent-report based MacArthur Communicative Development Inventories (Fenson et al., 1993; see also http://www.sci.sdsu.edu/cdi/ for information on adaptations into other languages) and other instruments that are “language-independent,” such as pragmatically focused questionnaires (Damico, 1991; Restrepo, 1998).
American English Dialects. Dialects of American English are of equal concern when assessing the communication performance of children with MR/DD. SLPs are expected to be knowledgeable of the dialects of American English and sensitive to the linguistic and cultural context in the delivery of communication assessment and intervention services to MR/DD populations. The dialects of American English include but are not limited to African American English, Appalachian English, and Standard American English (SAE). A core responsibility in assessment is the ability to discriminate dialect differences from language disorder, so that the former is not taken as evidence for the latter. In addition, English, which is structurally influenced by the LEP learner's native language (e.g., Spanish- or Russian-influenced English), may also be viewed as a dialect, and such features should not be misinterpreted. These discriminations require knowledge of dialects and typical influences from other languages. The roles and responsibilities and required competencies of SLPs in dealing with American English dialects can be found in the ASHA technical report, American English Dialects (ASHA, 2003a).
The National Institutes of Health has supported development of tests to identify children with language impairment among children who are African American dialect speakers and bilingual (Spanish-English) at school entry (i.e., around age 5). For example, a screening test (Seymour, Roeper, & de Villiers, 2003b) and a criterion-referenced test (Seymour, Roeper, & de Villiers (2003a) were developed for students speaking African American dialects. Assessment protocols are currently under development for children who are bilingual Spanish and English speakers. These new tests will provide tools to document language performance among children with MR/DD learning two languages or speaking a dialect other than mainstream English. Research findings from studies aimed at identifying factors limiting the reading and school achievement among bilingual children is beginning to emerge. For example, Francis, Iglesias, and Miller (2004) found in a cross-sectional study of bilingual students that about 10% of the sample of several thousand children was low in both languages. This rate is similar to the prevalence rate for SLI identified by the Iowa project (Tomblin et al., 1997).
Assessment is a process for gathering information to answer questions or make decisions beyond making a diagnosis or identifying deficits in skill development (Schwartz, Boulware, McBride, & Sandall, 2001). Comprehensive, interdisciplinary, family-centered, and culturally appropriate assessments serve as road maps for intervention planning (Boulware, Schwartz, & McBride, 1999; Prelock et al., 2003; Schwartz et al., 2001). To ensure that persons with MR/DD receive the full benefit of an intervention program, there must be links among assessment, goal setting, and program planning (NJC, 1992). SLPs should provide communication, feeding, and swallowing assessment services and supports that honor and adapt to differences in families, cultures, languages, and resources. They also should recognize the integral role families and persons with MR/DD play in the assessment, goal setting, and intervention decision-making process.
The AAMR (2002) multidimensional model of disability, specifically for mental retardation, has important implications for assessment teams. As described earlier, five interrelated dimensions of individual functioning are included: intellectual abilities (Dimension I); adaptive behavior (Dimension II); participation, interactions, and social roles (Dimension III); health (Dimension IV); and context (Dimension V). Similar to the body function level for the ICF, Dimension I of the AAMR requires an assessment of intellectual function and a determination of significant limitation. Dimension II is the assessment of adaptive behavior, which is conceptually similar to the activity level for the ICF in which a person must be able to execute a task. As in the ICF, in Dimension III, a person's participation, interactions, and social roles are considered in the assessment. In Dimension IV, health is evaluated, particularly an examination of health conditions that may affect the dimensions just described. As in the ICF, this dimension is related to understanding the involvement of body structure and function. The final dimension (V) is the influence of context on an individual's behavior. Thus, the AAMR and the ICF are based on models of disability that are highly comparable and that can be used to assess and plan for those elements needed to address functional limitations in major life activities such as understanding and using language, learning, mobility, self-care, self-direction, and capacity for independent living (AAMR, 2002). Assessment teams should consider both the worldview of disability offered in the ICF framework as well as the more specific view of mental retardation in their assessment planning.
Every individual with MR/DD lives with a family or other caregiver, goes to a particular school, may have a job, and is a member of a unique network of neighbors and friends. Home, school, work, and community environments provide valuable contexts for assessment. Consideration of these contexts is responsive to the ICF framework and the AAMR definition and helps to define the activities that persons with MR/DD can execute and the level of participation they have in the environments in which they live, learn, work, and engage with others.
SLPs collaborate with families and other team members to identify, select, and modify strategies and tools to assess functional behaviors for individuals with MR/DD considering their age, ability, and needs. Appropriate assessment considers all relevant modalities, which may include spoken language, gestures, signs, AAC systems, comprehension, social aspects of communication, cognitive aspects of communication, reading and writing, and adaptive behavior. Further, assessment across contexts requires gathering information from multiple sources about communication function and intentionality, and opportunities for communicating in natural environments with familiar and unfamiliar peers and adults.
Within each of these contexts, SLPs also consider the unique problems encountered in the assessment of individuals with MR/DD who exhibit a level of function that is significantly different from their chronological age. This gap between ability and age increases over time and affects assessment goals and choices of assessment tools or approaches. Further, as an individual with MR/DD moves through the educational system, the role of assessment is likely to be less for the purposes of determining diagnosis or eligibility for services and more for refining a program plan and addressing long-term functional needs.
The importance of developing and using appropriate assessment tools for adults with mental retardation, including assessment of social functioning, is highlighted by the publication of a special journal issue dedicated to assessment in adults with MR/DD (e.g., Bielecki & Swender, 2004; Matson, 2004) as well as other research articles on assessment and service delivery for this population (Cascella, 2004; Freeman, 2003). In treatment, goal setting for adults often focuses primarily on goals that will support transitions to new living arrangements, employment, and independence. These functional goals may involve communication skill development of the individual with MR/DD. Programming also may involve training of the broader circle of potential partners with whom that individual might interact (job coaches, employers, community members, and others). Because functional communication goals necessarily vary depending on the specific life circumstances of each individual, there is limited usefulness in identifying a specific set of universal goals for adults. Recommendations do exist, however, from which service providers can develop individual plans (e.g., Mar & Sall, 1999; McNaughton & Light, 1989; Mire & Chisholm, 1990).
Home. Assessment in the context of the home (including group homes, community living arrangements, and other residential settings) requires SLPs to “partner” with families, guardians, and caregivers (Johnson & Lindschau, 1996; Prelock et al., 1999; Shelton, Jeppson, & Johnson, 1987; Vincent, 1985). As partners in the assessment process, both families and practitioners value the expertise each brings to the experience. Assessment approaches in the context of home consider the hopes and dreams of persons with MR/DD and their families, their priorities and needs for assistance both short term and long term, and their structure, routines, and existing resources (Winton, 1996). Assessment in the home context also leads to understanding the impact of culture and the particular role an individual with disabilities has within the family (Westby, 1990; Winton, 1996). It is flexible and individualized, recognizing the diverse beliefs, opinions, and backgrounds of families (Trivette & Dunst, 2000) and the age, ability level, and needs of individuals with MR/DD.
School. Assessment for determining eligibility for services in school is discussed above under Eligibility for SLP Services. Assessment for effective intervention services identifies the specific needs of the individual in the school context. It requires SLPs to assess the communication abilities of persons with MR/DD that promote and hinder the development of literacy, access to academic content, interaction with typical peers, participation in general education, and transition across tasks, events, and circumstances. SLPs also assess feeding and swallowing capabilities that affect health and safety, adaptive function, and participation within the school environment. The school context provides SLPs with a unique opportunity to establish a more functional approach to assessment for individuals with MR/DD, as their diagnosis and eligibility have been previously determined and remained unchanged. Opportunities for communication and social interaction, such as making choices, requesting information, stating a need, initiating interaction, and problem solving can be examined throughout the day. Both facilitators of and barriers to effective communication and social interaction can be identified.
Work. In the context of work, assessment involves an evaluation of the strengths and needs that persons with MR/DD exhibit in their job setting. SLPs need to observe and describe the ability of persons with MR/DD to execute tasks in consistent and standard ways. They also need to identify the requirements and challenges for communication in the individual's particular work setting.
Community. The community provides a critical assessment context that is also responsive to the ICF framework and AAMR definition. Community is a social phenomenon that leads to a sense of belonging. It provides meaning to our experiences and our work. Communities support persons with MR/DD and their families as well as the professionals who serve them. This community support fosters success in defining the communication needs, preferences, and priorities, and builds the communication strengths for persons with MR/DD. SLPs have a responsibility to collaborate with families and members of the community team (e.g., physician, vocational rehabilitation counselor, developmental services case manager) to assess the supports needed and resources available to ensure individuals with MR/DD have meaningful access to their community resources.
Within the contexts of home, school, work, and community, SLPs may implement a variety of assessment approaches. Two more recently developed approaches to consider for assessing persons with MR/DD are ecological and dynamic assessment. An ecological approach to assessment is well-suited to address the dimensions of the ICF, particularly at the activity/participation level. Ecological assessment considers the influence of broad aspects of an individual's environment on behavior. It requires observation of daily activities and learning about the skills an individual has an opportunity to use and develop (Haney & Cavallaro, 1996). It involves asking “the questions that need to be asked” (Westby, 1990), using informal assessment tools and strategies, carefully selecting formal measures, obtaining information from multiple sources (Guralnick, 2000), and identifying the supports needed to address social, behavioral, emotional, and academic function priorities. In addition, ecological assessment explores the available resources in a family's world, including those that are nonexistent or in short supply, and the nature of the relationships among individuals with MR/DD, their families, and the contexts in which they live, learn, work, and interact.
Gillette (2003) has developed an assessment approach with a heavy emphasis on ecological assessment that can be used across the life span. Achieving Communication Independence (ACI) is a tool designed to guide the assessment, planning, and implementation of intervention for individuals with significant communication disabilities and their families or caregivers (Gillette, 2003). It comprises three specific assessment components: the Communication Opportunities Inventory, the Communication Skill Inventory (CSI), and the Skill Component Analysis. The Communication Opportunities Inventory is a checklist of opportunities for communicating with partners across several environments, including home, school/work, leisure/learning, play, and the community. The checklist helps the clinician identify both existing and potential communication opportunities, rating the number of opportunities with individual partners (e.g., family members, teachers, peers, friends, housemates, supervisors, care providers, and classmates; Gillette, 2003). Examples of possible contexts include “going to a movie” (community), “participating in the classroom” or “arriving at work” (school or work), “washing dishes” (home), “playing ball” (play), “planting seeds” or “looking at books” (leisure or learning) (Gillette, 2003, p. 63).
The CSI rates an individual's independent use of 11 skills required for success in communicating, using a 7-point scale ranging from potential (1–2) to emerging (3–4–5) to established (6–7). The skills targeted for assessment are placed in four categories: interact (includes participation, indication, social acceptability, emotional balance); communicate (includes nonsymbolic and symbolic); receive (includes attention, behavior response and contextual response skills); and express (includes varying message functions and intelligibility) (Gillette, 2003, p. 64). The Skill Component Analysis breaks down each of the behaviors that contribute to the 11 communication skills. For example, in the interact category of the CSI, several individual behaviors are identified and rated on the same 7-point scale. The three inventories of the ACI can be used to provide a rather comprehensive description of the communication opportunities, partners, environments, skills, and messages that might be considered during an assessment for an individual with MR/DD.
Unlike traditional assessment where information is gathered in a single context at a single point in time, dynamic assessment involves ongoing data collection and information gathering. Intervention principles guide the dynamic assessment framework in that a pre-assessment is followed by diagnostic intervention, and then an outcome measurement period, allowing for potential change to be assessed (Pena, 1996). Dynamic assessment involves gathering structured and systematic observations within functional context-bound activities in multiple settings (Bain & Olswang, 1995; Notari-Syverson & Losardo, 1996; Olswang & Bain, 1996; Olswang, Bain, & Johnson, 1992; Pena, 1996). The assessment is structured to provide-teachable moments” that have implications for later instruction. These teachable moments provide the examiner with insight about an individual's learning capacity and ability to regulate change. Typically, the examiner's role in dynamic assessment is one of teacher-observer rather than examiner, while the role of the individual to be assessed is learner-performer rather than test taker (Feuerstein, Rand, Jensen, Kaniel, & Tzuriel, 1987). These roles lead to two-way communication at an interaction level between the examiner and test taker. Test orientation in dynamic assessment refers to the selection of assessment materials and tools that focus on process versus product. Assessment materials or strategies are selected that support observation-based assessment in natural environments within the areas found to be most challenging. Ultimately, dynamic assessment yields information about an individual's capacity to change performance with adult support or scaffolding. It is particularly valuable to individuals with MR/DD because it identifies effective adaptations to achieve success, based on the individual's adaptive, behavioral, cognitive, communication, and social needs. It can provide strategies to regulate learning and establish a foundation for developmentally and individually appropriate interventions (Lidz, 1987, 1991).
SLPs can draw on a range of forms of communication assessment to obtain information needed for effective programming. Choices of formal and informal measures are made in consideration of families' questions as well as the needs, behavior, and ability of the individual. Questionnaires and interviews with parents, teachers, and other service providers can be used to gain information about team members' concerns and priorities as well as previous strategies used with individuals with MR/DD (Goldstein, Kaczmarek, & Hepting, 1996). At times, formal testing may be required if diagnosis or eligibility have yet to be determined for a child at risk for, or suspected of, a developmental disability. Informal testing may be most useful to determine the child's achievement of specific developmental milestones. Probes can be designed to assess the individual's communication forms, meanings, and functions by arranging the environment to stimulate specific types of communication. Communication samples can be collected to determine the range of forms, meanings, and functions, calculating such measures as mean length of utterance, type-token ratios, and number and type of propositions (Goldstein et al., 1996). Communication interactions can be assessed using coding systems that identify with whom and how an individual communicates in structured and unstructured situations. Each of these specific types of communication assessments can provide complementary information to understand the communication strengths, challenges, and needs of individuals with MR/DD.
The various assessment measures described above, particularly the ecological and dynamic assessments, also are well-suited to integrating the accommodations that may be necessary if nonspeech modes of communication are being considered. Many individuals with MR/DD are candidates for augmentative and alternative (AAC) forms of communication, often in the form of visual supports like picture symbols, written words, or miniature objects (all of which are forms of aided AAC) or signs (unaided AAC). Because few standardized tests are available to examine AAC, particularly aided AAC modes like picture symbol use, specific accommodations are necessary (ASHA, 2002, 2004d).
Other types of assessment focus on programs rather than the person with MR/DD. A good example is the Communication Supports Checklist developed by the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. This assessment is used to systematically review a program's delivery of communication supports and services reflecting recommended practices (McCarthy et al., 1998). The goal of this checklist is to identify the current level of services and supports and to identify gaps between actual service provision and recommended practices to optimize communication. The Checklist guides the team to address the following questions:
Do our practices support and respect the communication rights of the individuals we serve?
Do our settings support and promote meaningful communication in natural contexts?
Do our assessment, goal-setting, and program implementation practices conform to current recommended practices?
Does our team have the knowledge and skills needed to support the communication needs of people with severe disabilities? (McCarthy et al., 1998, p. 4)
The use of the Checklist to assess a program's strengths and weaknesses leads to the development of a Communication Supports Action Plan to build on program strengths and to work on areas identified that need improvement. The Communication Supports Checklist is a unique instrument aimed at assessing programs rather than individuals that SLPs can use to help them optimize everyday communication opportunities for enhancing the quality of life of persons with severe disabilities.
Wolery and Sainato (1996) provided a useful conceptualization of intervention. They defined intervention as practices that minimize the potential debilitating effects of disabilities on clients and their families and maximize the likelihood of desirable outcomes. SLPs in collaboration with service delivery teams and families help individuals to achieve goals that have been identified to promote the well-being of their clients and their families, especially teaching communication, feeding, and swallowing skills that will help individuals negotiate their social world successfully. This conceptualization may be viewed as subsuming prevention. If individuals with MR/DD acquire effective means of interacting and mastering their environments, then future concerns and problems often associated with MR/DD may be minimized or prevented.
In this section, we review how patterns of communication could vary based on known etiologies associated with MR/DD. Although individual variation exists within these general characterizations, knowledge of what one might expect is sure to have implications for assessment and goal-selection decisions. Second, we consider the context for intervention for individuals with MR/DD. In particular, three types of service delivery models are discussed, and recommended uses of these models for serving individuals with MR/DD are highlighted. Third, as the trend toward serving individuals with MR/DD in their natural environments and everyday contexts grows, there is increasing attention to how SLPs and other service providers respond to and prevent challenging behavior. Because of the realization that challenging behavior often has a communicative function, SLPs are becoming more involved in designing and implementing functional assessments and intervention procedures that seek to replace challenging behavior with more appropriate forms of communication. The array of teaching techniques used by SLPs is, by and large, applicable to individuals with MR/DD. In the final sections we highlight a number of intervention approaches and teaching techniques that have widespread applicability to individuals with MR/DD. We also stress the need for SLPs to continually evaluate the effects of their intervention efforts so they can adapt and refine their intervention approaches to meet the needs of their individual clients with MR/DD.
Persons with different types of disabilities or diagnoses often have different patterns of communication (Wetherby, Yonclas, & Bryan, 1989). Certain communication patterns may be typical characteristics of a particular condition (e.g., Down syndrome, Fragile-X syndrome, autism). However, not all people with a specific diagnosis will have the same communication abilities or disabilities. People with the same diagnosis will display considerable variation in their communication skills due to many factors, such as severity, type, and extent of support from communication partners, secondary conditions, and other behavioral, emotional, and social factors. There will be variations in outcomes even for people within the same diagnostic group; thus, etiology, while informative, is less important than the behavior presented. Therefore, any information about typical communication patterns should be used only as one source of suggestions to assist with assessment planning and goal setting.
Table 2 provides some general communication outcomes for Down syndrome, Fragile-X syndrome, and autism. Treatment goals and plans must be individualized based on each person's communication strengths, needs, preferences, and priorities, and not on the basis of a diagnostic category. A review of this table reveals distinct features of communication that can be predicted for people with the most common conditions associated with MR/DD. These different etiologies have somewhat different expected outcomes for speech, language, and communication (Abbeduto, 2003; Miller, 1995; Miller, Leddy, & Leavitt, 1999; Paul, 2001). The predicted features cited in Table 2 can be used to direct assessment efforts to document an individual performance profile. For example, children with Down syndrome require a detailed evaluation of syntactic production relative to comprehension along with a speech intelligibility inventory. Individuals with Fragile-X syndrome, on the other hand, would benefit from a detailed evaluation of social communication relative to language structure and function. It also may be possible to use areas of strength during intervention to bolster areas of communication need. For example, if a child has weak auditory comprehension skills, but relatively strong visual memory, the visual modality could be paired with the auditory during an activity designed to teach new vocabulary for use on an AAC device.
Brady and Warren (2003) pointed out that little research has compared the effects of specific communication interventions on different populations of children with developmental disabilities. However, it is clear that selection of target behaviors has benefited from an increased understanding of the specific communication deficits associated with various diagnoses, especially the most studied populations—Down syndrome and autism. Communication interventions with children with Down syndrome have tended to focus on improving intelligibility through speech and alternative modes of communications (Girolametto, Weitzman, & Clements-Baartman, 1998; Kay-Raining Bird, Gaskell, Babineau, & MacDonald, 2000; Kumin, Goodman, & Councill, 1996; Layton & Savino, 1990; Warren & Yoder, 1998; Yoder & Warren, 2001). In contrast, communication interventions with children with autism have tended to focus on social communication skills (e.g., Goldstein, English, Shafer, & Kaczmarek, 1997; Kaiser, Hancock, & Nietfeld, 2000; Pierce & Schreibman, 1995; Smith & Camarata, 1999; Stevenson, Krantz, & McClannahan, 2000; Thiemann & Goldstein, 2004). Current research, funded by the National Institutes of Health (NIH) and other federal agencies addressing the language and communication abilities of persons with MR/DD, is focusing on specific etiologies, particularly for autism, Down syndrome, and Fragile-X syndrome, so we can expect the knowledge base to advance significantly in the next decade.
In addition to differences in behavioral profiles associated with certain etiological categories, decision-making preferences in families may vary as a result of unique etiologically linked behavioral challenges. Examples can be found across the life span. Inclusive settings are emphasized in general by professionals as well as parents for toddlers and preschool children with language impairments (e.g., Bruder, 2001; Individuals with Disabilities Education Act [IDEA] and amendments 1990, 1997, 2004; Odom & Bailey, 2001), yet families with children with pervasive developmental disorders have used legal means to seek intensive interventions, often in specialized settings, because they believe their children learn in unique ways (Yell & Drasgow, 2000). Parents of school-aged children with Down syndrome tend to seek inclusive school placements, whereas specialized schools often are preferred by parents of children with Prader-Willi syndrome, perhaps in part due to the unique food-seeking obsessions and aggressive behaviors associated with the syndrome (Hodapp, 2001).
Recent studies have evaluated the adaptive behavior functioning of individuals with Prader-Willi syndrome more broadly across the life span (e.g., Dykens & Cassidy, 1999; Dykens & Hodapp, 1999). Preliminary results suggest that challenging behavior may peak postadolescence, during the 20–30-year age range, then decline in later years. This means that the types of supports required for these individuals may continue to change after they have graduated from the public school systems. Thus, goals for these individuals may need to adapt to these changing developmental needs even in adulthood.
Researchers have found unique behavioral profiles associated with certain etiologies that may in turn affect decision making and goal selection of individuals with MR/DD as well as of their families (Hodapp & Dykens, 2001; Hodapp, Freeman, & Kasari, 1998). Although never useful in isolation, etiological considerations may help SLPs place into context the functioning status and choice making of individuals with MR/DD and their families.
Current legislation, societal values, and professional policies all require that services for persons with disabilities be based on their individual needs, preferences, and skills (IDEA, 1997; NJC, 2003a, 2003b). Dimensions of service delivery include where the services are provided, by whom, and on what schedule. The service delivery models used by SLPs for persons with MR/DD are individualized on the basis of each person's communication needs and life circumstances (ASHA, 2005-b; Paul-Brown & Caperton, 2001). In addition, service delivery models or combinations of models are dynamic and may change over time depending on a person's developing and changing communication profile.
Service delivery options for SLPs typically include three distinct models: pull-out, classroom-based, and collaborative consultation (ASHA, 1993, 1999; Holzhauser-Peters & Husemann, 1988, 1990; Meyer, 1997). The pull-out model, where the SLP works directly with an individual or small group in a separate treatment room, has been and continues to be the predominant service delivery option for SLP practice across populations and ages (ASHA, 1993, 1995, 1999). The rationale for this model is that it may be more useful and easier than other models for teaching specific skills that benefit from repetitive trials (e.g., articulation training), for teaching new behaviors (e.g., initial use of an AAC device), for structuring conversational exchanges (Paul-Brown & Caperton, 2001), for minimizing auditory and visual distractions, and for offering privacy. Despite these important considerations, exclusive use of this model with persons with MR/DD is rarely appropriate. Failure to generalize is a commonly cited drawback to traditional pull-out models of service delivery (Cirrin & Penner, 1995; Nelson, 1998).
Indeed, lack of generalized effects was a frequent criticism of much of the child language intervention research conducted in isolated settings during the 1970s and 1980s (see Goldstein & Hockenberger, 1991). This limitation sparked interest in developing a technology for promoting improved generalization (Stokes & Baer, 1977). It also served to highlight promising approaches to language intervention, such as incidental language teaching, that were being implemented in preschool and later in home settings (Hart, 1985; Hart & Risley, 1978; Kaiser, Yoder, & Keetz, 1992). Generalization of skill use becomes a nonissue when functional skills are taught in the environments in which these skills are expected to be used and reinforced. Intervention within everyday settings minimizes the need to program for generalization from a training setting to performance settings.
Other service delivery models are more compatible with goals related to functional communication where generalization is an integral aspect of the treatment rather than being a separate treatment goal. With a classroom-based model, an SLP offers services directly in the classroom and works collaboratively with the teacher. The SLP plays a more indirect role in the collaborative consultation model and the context for treatment is still the classroom. There are several advantages to providing services in the everyday contexts of persons with MR/DD. More contextually based models are consistent with the natural environments philosophy and the move toward inclusive educational programming (Myles, Simpson, Ornsbee, & Erickson, 1993; Paul-Brown & Caperton, 2001). Such models also are used to prepare persons with MR/DD for transitions to independent living and working (Clees, 1996; Luce & Dyer, 1995; Morris, 2002; Patton, Polloway, Smith, & Edgar, 1996; White, Edelman, & Schuyler, 2001).
By providing services in everyday contexts, the SLP is privy to the communication requirements of the situation and can readily compare the communication of the person with MR/DD to the communication of other individuals in the same setting. This model is consistent with the ecological assessment model discussed above. By focusing on multiple contexts, one can maximize the time available for teaching and the opportunities for learning by dispersing intervention throughout the day within frequently occurring activities, events, and routines. Opportunities to respond and academic engagement have been cited as robust predictors of learning and academic achievement (Greenwood, Horton, & Utley, 2002). Placing individuals with MR/DD in natural environments is not sufficient. The SLP and other team members must ensure that the client is engaged in learning. Indeed, it is critically important that the learning situation is structured to provide lots of opportunities to practice and gain feedback if the individual with MR/DD is going to master functional communication and other adaptive skills.
Intervention in multiple contexts implies a portable approach to service delivery that allows the person with MR/DD to practice functional skills whenever and wherever they are useful and meaningful. It also implies that multiple communication partners besides the SLP are involved in service delivery in various settings. Involved partners may include parents, siblings, grandparents, friends, and acquaintances in the home; teachers, classmates, paraprofessionals, and others in the school; employers, job coaches, and fellow workers in vocational settings; and a variety of conversational partners in community settings (recreational facilities, churches and synagogues, stores, etc.). A coordinated and collaborative approach to service delivery can optimize the use of communication intervention strategies. The SLP may take responsibility for teaching communication partners various techniques that foster communication learning and use. For example, the SLP may arrange the environment to set the occasion for communication and may model the use of prompts and cueing strategies. SLPs may encourage communication partners to be responsive to the communication attempts of persons with MR/DD. The SLP needs to consider the abilities, resources, and preferences of supportive people in various everyday contexts. Collaborative consultation and contextually based service delivery models appear to be the most appropriate approaches to use when services involve multiple settings and partners. Decisions related to service delivery should be made by the team committed to the care of the individual with MR/DD. It is important that these team decisions actively engage not only service providers but the family and the individual with MR/DD as appropriate (Clees, 1996; Strain, Smith, & McWilliam, 1996; Wehmeyer, 2001; White et al., 2001).
The bridge between assessment and intervention can be well-illustrated in the treatment of challenging behavior, an area of increasing involvement of SLPs. Treatments for challenging behavior have been investigated primarily with particularly difficult cases of individuals with MR/DD who often were dangers to themselves or others, typically with one or two participants per study. This topic also illustrates how a strong body of empirical evidence can be developed based almost exclusively on a host of single-subject design experiments.
Since Iwata and his colleagues' (1982) and Carr and Durand's (1985) classic studies, there has been an increasing awareness that challenging behavior often serves a communication function, albeit inappropriately. The term challenging behavior is used rather than other more negative or judgmental terms (e.g., aberrant, problem, or maladaptive behavior). Behaviors such as hitting, biting, tantrums, and self-injury are certainly challenging, but to call them maladaptive may be misleading. In fact, these behaviors can be quite adaptive for individuals with MR/DD in that they effectively provide individuals access to desired consequences. Numerous studies (see Horner, Albin, Sprague, & Todd, 2000; Reichle & Wacker, 1993; Sandall & Ostrosky, 1999) have taught communication skills to individuals with MR/DD as alternatives to a variety of challenging behaviors (e.g., stereotypy, aggression, tantrums, property destruction, self-injury, echolalia). The idea of communication alternatives to challenging behavior emphasizes a view of language as a means of control over one's environment. This functional communication training approach has developed based on research with especially difficult cases, most often children and adults with severe developmental disabilities and severe behavior problems, many of whom have been diagnosed with autism. This issue also may emerge early in development in a less severe form for children with prolonged unintelligible speech (e.g., Down syndrome or Fragile-X syndrome) who become frustrated with unsuccessful communication attempts. For these children, alternative communication modes, signing, or other AAC production systems successfully reduced challenging behaviors associated with frustration (Durand, 1993; Mirenda, 1997). Overall, the goal is to replace challenging behaviors with appropriate communication alternatives rather than eliminate the challenging behavior with no communication options.
Functional communication training involves a careful assessment and intervention process (Fox, Benito, & Dunlap, 2002; Schwartz et al., 2001; Wickstrom-Kane & Goldstein, 1999). The first step in the problem-solving process is the definition of the challenging behavior and the identification of antecedent and consequent variables hypothesized to motivate challenging behavior in individuals with MR/DD (Dunlap & Fox, 1999; Lucyshyn, Kayser, Irvin, & Blumberg, 2002; Schwartz et al., 2001). The term functional assessment often is used to describe any or all aspects of the hypothesis development and hypothesis testing process. Functional analysis is a related term that SLPs may encounter, but typically it refers specifically to hypothesis testing procedures. Carr et al. (1994) described a three-step functional assessment process in which one sequentially describes, categorizes, and verifies the behavioral relationships. The description and categorization steps are essentially hypothesis development. The verification or hypothesis-testing step involves use of functional analysis procedures. Identifying the function of challenging behaviors to develop effective interventions can be a complex task in itself. For example, Haring and Kennedy (1990) showed that the motivation of a specific challenging behavior could vary based on context (task vs. leisure contexts). Because determining the function of challenging behavior is sometimes difficult, SLPs should consider a potentially preventive approach by teaching communication skills that serve multiple functions (Wacker et al., 1990).
If one can identify the function of the challenging behavior, then one should be able to target specific language skills to serve the same communication function. Some possible functions include gaining attention (social reinforcement function), expressing wants or needs (tangible reinforcement function), indicating frustration or a desire to avoid a nonpreferred activity or event (escape-avoidance function), and gaining sensory input (sensory reinforcement function). Appropriate communication forms can be adapted to the individual's abilities to request attention (for the social reinforcement function); to request materials, foods, and so on (for the tangible reinforcement function); and to request help or a break (for the escape-avoidance function). On the other hand, challenging behavior motivated by a sensory reinforcement function may imply that social communication is not a good alternative behavior, although more acceptable forms of sensory stimulation may be considered.
Functional communication training has been quite illuminating as an approach to understanding and treating echolalia. Schreibman and Carr (1978) found that they could replace echoing of questions with a general verbal response (“I don't know”). McMorrow and Foxx (1986) demonstrated that inhibiting the echoing of questions accompanied with teaching of correct responses (either through written cues or peer modeling) resulted in appropriate responding. Thus, teaching individuals to pause before responding proved beneficial. In subsequent extensions to this work (McMorrow, Foxx, Faw, & Bittle, 1987; Foxx, Faw, McMorrow, Kyle, & Bittle, 1988), they found that subsequent to cues-pause-point training, participants were able to apply their labeling repertoire to untrained questions in a variety of generalization settings. In an application to receptive language, Davis, Brady, Williams, and Hamilton (1992) demonstrated that embedding requests that are unlikely to obtain a response (low-probability requests) within a series of requests that are responded to readily (high-probability requests) can improve instruction following.
When individuals with MR/DD are taught communication skills that serve efficiently and effectively as alternative behaviors, reductions in challenging behaviors result (Bird, Dores, Moniz, & Robinson, 1989; Carr & Durand, 1985; Durand & Carr, 1987, 1992; Horner & Budd, 1985). This is an especially important area for SLPs because of the intense interest in managing challenging behavior of students with MR/DD in school, as well as in home and community settings. Identifying and treating behaviors early in development may prevent negative longterm consequences as well as promote appropriate communication using alternative modes. The replacement of challenging behaviors with appropriate and increasingly sophisticated communication skills has the potential to improve subsequent growth in academic achievement, social relationships, and vocational outcomes.
Persons with MR/DD are not likely to learn to be competent communicators without direct intervention. Consequently, SLPs need to be knowledgeable about principles and strategies of instruction. SLPs may be guided by basic principles that outline how to approach problems in learning among individuals who are considered difficult-to-teach (cf. LeBlanc & Ruggles, 1982). Investigations of sophisticated instructional procedures demonstrate how various prompting and fading approaches can be applied to teaching communication and other adaptive skills to persons with MR/DD (Wolery, Ault, & Doyle, 1992). In some cases, the differential effectiveness of these procedures has been compared and has helped us to identify what skills might be better taught using a time-delay procedure versus a least prompting procedure (e.g., Doyle, Wolery, Ault, & Gast, 1988; Wolery, Doyle, Gast, Ault, & Simpson, 1993; Wolery & Gast, 1984; Wolery et al., 1992). Wolery and Sainato (1996) have outlined instructional strategies on a continuum of teacher directiveness that have been implemented in early intervention contexts. In general, less directive strategies are more useful for promoting learning when clients are likely to be initiators of teaching episodes. More directive strategies are likely to be more useful when teaching important goals that clients are less likely to initiate or when approximations are not in the individual's repertoire. A comprehensive discussion of teaching techniques is beyond the scope of this report. However, it is worth noting that common language intervention strategies typically encompass a variety of techniques and nuances. Few teaching techniques are used in isolation; they are typically combined.
For example, SLPs commonly use the strategy of “arranging the environment” to facilitate communication (Halle, 1988; McCormick, Frome Loeb, & Schiefelbusch, 2003). The idea behind this strategy is to increase the client's interest in the environment and to set the occasion for communication. The SLP can build on the client's desire to request and comment on aspects of the environment using strategies such as putting interesting materials in sight but out of reach, sabotaging the situation with missing elements or providing inadequate portions, and setting up choice-making, unexpected, or silly situations. Although environmental arrangement may be an essential component of communication intervention, it is rarely used in isolation. In general, one should not assume that providing ample opportunities to use and observe communication skills is sufficient to promote learning. For example, Filla, Wolery, and Anthony (1999) instituted a clever environmental arrangement, setting up theme boxes in a restricted play space with two play partners in preschool classrooms. Unfortunately, they found no differences in peer conversation rates. However, conversation improved when prompting procedures were instituted.
Other researchers have observed that simply placing individuals with MR/DD in natural environments is not likely to have profound effects on social and communication interactions (Guralnick & Paul-Brown, 1989; Mundschenk & Sasso, 1995; Sigman & Ruskin, 1999; Strain, 1983). Perhaps the best developed interventions to improve the social skills of children who are socially withdrawn (e.g., children with autism) are mediated by peers. For example, when typical preschoolers have been taught to use simple facilitative strategies (e.g., staying in close proximity, suggesting play ideas, describing ongoing activities, and responding to the reticent communicator), socially withdrawn children eventually begin to respond and increase their interactions with peers (see Goldstein, Kaczmarek, & English, 2002, and McConnell, 2002, for reviews). Combining various arrangements of the environment (e.g., preferred activities, cooperative learning) with facilitative strategies implemented by peers and spreading them across the day has produced improvements in the social communication abilities of individuals with MR/DD. Research is continuing to address issues related to how to sustain these effects and help individuals with MR/DD to establish friendships and peer relationships (Goldstein & Morgan, 2002; Odom, McConnell, & McEvoy, 1992; Odom, McConnell, McEvoy, et al., 1999; Pierce & Schreibman, 1995; Strain & Hoyson, 2000).
Other families of teaching strategies have a good deal of empirical support. For example, a number of milieu language teaching procedures (modeling, mand-model, and time delay) were developed as an outgrowth of failures of children with developmental disabilities to learn from incidental language teaching procedures (Halle, Baer, & Spradlin, 1981; Hancock & Kaiser, 2002; Kaiser, Hemmeter, & Alpert, 1992; Kaiser & Hester, 1994; Kaiser, Yoder, & Keetz, 1992; Koegel, 1995; Rogers-Warren & Warren, 1980). Milieu language teaching is another approach that utilizes environmental arrangement techniques. The environment is arranged to set the occasion for individuals with MR/DD to request objects, materials, toys, foods, or activities that are likely to be desired. Incidental teaching requires an initiation by the client, which serves to begin a language teaching episode. However, if the client does not initiate, then an expectant look and a time delay procedure might be sufficient to prompt language use. Alternatively, the interventionist may prompt the client to initiate (e.g., in response to “What do you want?”), using a mand-model procedure. Finally, the most intrusive teaching technique might involve prompting an imitative response (e.g., “Say: I need paint”). Milieu language teaching and other related procedures offer systematic approaches to prompting children to expand their repertoire of communication functions and to use increasingly complex language skills (Kaiser, Yoder, & Keetz, 1992; Koegel, Camarata, Koegel, Ben-Tall, & Smith, 1998; Koegel, O'Dell, & Koegel, 1987; Laski, Charlop, & Schreibman, 1988).
Milieu language teaching is one of many treatments that might be considered a “naturalistic” communication intervention approach. Hepting and Goldstein (1996) reviewed 34 studies that were experimental investigations of naturalistic language treatments. These treatments could not be characterized easily based on their names. In trying to characterize them, Hepting and Goldstein found that the treatments seemed to use a limited set of basic teaching procedures. They were able to describe the treatments based on the use of eight procedures that manipulated antecedents (prompting imitation, manding verbalization, requesting elaboration or clarification, waiting for initiations or responses, arranging the environment, modeling, repeating/expanding/recasting, and descriptive talking) and three procedures that manipulated consequences (delivering desired consequences, praising, and minimal encouragers). These techniques were used in various combinations, yet these investigators were able to demonstrate improvements in communication skills that could be attributed, by and large, to these naturalistic communication treatment packages. We do not yet have empirical investigations that elucidate what treatment components are most responsible for learning, how to combine treatment techniques most effectively, or how to adapt and refine treatment packages to different types of goals, contexts, and individuals.
Because of the increasing interest in identifying evidence-based practices, the compendium of effective intervention strategies and information on how they can be implemented most effectively will continue to be refined through systematic research. It is important to realize that new treatment protocols most often draw upon a relatively small number of basic teaching techniques. However, how they are combined, refinements in their implementation, the behaviors that are being targeted, and the context for intervention continue to challenge SLPs and researchers as they seek to maximize functional treatment outcomes.
Oftentimes, the SLP will play a role in determining how the environment might best be adapted to optimize participation by the individuals with MR/DD. When students with MR/DD are included in the general education curriculum, they may not be able to handle the regular curriculum of their same age peers. However, the SLP is one of the team members who will identify challenging, yet achievable objectives that relate to the curriculum and that accommodate the needs of the individual with MR/DD. The accountability movement that tracks students' progress in the schools no longer permits school personnel to avoid evaluating the progress of students with special needs (No Child Left Behind, 2002). Students with MR/DD will be expected to participate in general education assessments and evaluations, with appropriate accommodations and alternative assessments as needed.
Regardless of the specific intervention strategies included in a treatment package, communication interventions need to be applied systematically to be effective. Implementation needs to be individualized to the person with MR/DD. Thus, implementation will vary based on the goals that are appropriate to the individual given one's particular life circumstances. It may vary in the levels of support needed to ensure understanding or production of communication behavior. Some individuals may benefit from augmentative or alternative modes of communication (AAC) to express themselves more effectively. Instructional strategies must be applied with sufficient consistency and frequency to ensure ample opportunities for individuals with MR/DD to learn and practice selected communication goals and receive feedback on their effects on social partners within their home, school, community, recreational, or vocational settings. The SLP is expected to make adjustments in these various facets of instruction based on the evaluation of the individual's progress in learning, using, and generalizing the functional communication skills targeted.
The SLP often is called upon to help maximize independent functioning in adults with MR/DD. The ACI (Achieving Communication Independence) discussed earlier, also has a planning tool that may help structure such efforts. Results of any of the three assessment inventories that make up the ACI can be used to design an individual intervention plan that considers several key components of communication. The plan might incorporate the following: choices for environments, opportunities to communicate within the specific environments selected, identification of potential communication partners, messages to be sent or received, skills needed to achieve communication, strategies for communication, schedules for practice, and any updates needed (Gillette, 2003). This planning tool is designed to support collaboration among the individual with significant needs and their potential communication partners.
Continual evaluation of progress is needed to assess behavior changes associated with intervention efforts and to assess changes in the individual's communication, feeding, and swallowing needs. Monitoring learning through objective data collection is essential for the SLP to determine whether intervention efforts are having the desired effect on communication skills. When progress is negligible, the SLP should be skilled in making adaptations. Sometimes it is additional support or new techniques that are needed to teach communication skills to individuals with MR/DD. Sometimes the adaptations that we need are in the goals or objectives that are being targeted.
The ecological and dynamic assessment approaches described above should help the SLP adapt to the changes in the life circumstances and communication demands of persons with MR/DD. The SLP can continue to play an important role in optimizing the ability of persons with MR/DD to adapt to those changes. As the person who may have adaptive limitations due to motor, social, or cognitive impairments grows into adolescence and adulthood, the SLP is part of the team that is seeking to maximize participation and independence in the person with MR/DD. The approach of the teenage years may put a premium on peer interactions and communication skills needed to optimize acceptance and relationship development. For example, the SLP might play a role in sensitizing peers to communication skills during implementation of peer support networks (Haring & Breen, 1992). The SLP may help with important milestones and rites of passage, such as an individual's first communion or Bar/Bat Mitzvah. Adults continue to experience life transitions that place new demands on communication, including using public transportation, speaking in front of groups, moving from school to work settings, visiting a non-pediatric physician, beginning to date, and so on. In contrast to individuals without developmental disabilities, the deficiencies in adaptive skills in persons with MR/DD make it essential for SLPs to be aware of changing communication demands and the likelihood that they can play an important role directly or indirectly in helping clients meet those new demands successfully.
As the call for evidence-based practices in speech-language pathology, medicine, and other fields continues to gain momentum, the empirical basis for intervention techniques will continue to grow. SLPs need to be educated in the implementation of effective intervention techniques through pre-service and in-service training programs. In addition, SLPs should be a source of innovative intervention strategies with behavior change carefully documented as part of individualized evidence-based practices. Evaluating client progress is a crucial step in advancing our clinical research agenda.
Tremendous strides in service delivery have been made since the move to deinstitutionalization in the early 1970s. When compliance with court-order reforms were subsequently questioned, experts in the field continued to debate whether individuals with disabilities, especially severe and profound disabilities, are capable of learning and living fulfilling lives in mainstream America (Baer, 1981; Bailey, 1981; Baumeister, 1981; Ellis, 1981; Favell, 1981; Hawkins & Hawkins, 1981; Kauffman & Krouse, 1981; Marshall & Marks, 1981; Martin, 1981; Townsend & Mattson, 1981). The nature of these debates has been refocused as research on effective practices has begun to better inform policy decisions associated with IDEA and other reforms. In retrospect, it is evident that the MR/DD field has established a proud tradition of discovery. The profound changes in services for persons with MR/DD in the last quarter of the 20th century have been the source of many of the educational innovations of today. SLPs and teachers are better prepared to manage classrooms of rambunctious students in productive and positive ways because of the many applications of learning theory to educating students with special needs. Examples include discrimination learning, behavior management strategies, reciprocal peer tutoring, replacing challenging behavior with communication alternatives, and early literacy interventions, to mention a few. SLPs should look forward to following the exciting new developments in education that represent productive responses to the need to better meet the needs of persons with MR/DD and their families throughout the life span. Likewise, research on genetics and the neurobases of behavior is likely to inform and perhaps transform our understanding of developmental disabilities in the next decade. It will be important to keep abreast of these research outcomes to better serve persons with MR/DD.
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Table 1. Comparison of diagnostic criteria and classification systems for mental retardation.
Table 2. Frequent diagnostic categories and their common communication outcomes.
Index terms: mental retardation, developmental disorders, intellectual disabilities
Reference this material as: American Speech-Language-Hearing Association. (2005). Roles and Responsibilities of Speech-Language Pathologists Serving Persons With Mental Retardation/Developmental Disabilities [Guidelines]. Available from www.asha.org/policy.
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doi:10.1044/policy.GL2005-00061