American Speech-Language-Hearing Association

Technical Report

Principles for Speech-Language Pathologists Serving Persons With Mental Retardation/Developmental Disabilities

Ad Hoc Committee to Review/Revise Current Practice and Policy Documents Related to Mental Retardation/Developmental Disabilities


About this Document

This technical report was developed by the American Speech-Language-Hearing Association (ASHA) Ad Hoc Committee to Review/Revise Current Practice and Policy Documents Related to Mental Retardation/Developmental Disabilities and was approved by the ASHA Executive Board on March 14, 2005 (EB 8-2005). 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.



Introduction

The position statement on Roles and Responsibilities of Speech-Language Pathologists in Service Delivery for Persons With Mental Retardation/Developmental Disabilities by the American Speech-Language-Hearing Association (ASHA; in press-c) emphasizes the critical role that speech-language pathologists (SLPs) play in ensuring that the communication needs of persons with mental retardation/developmental disabilities (MR/DD) are met across the life span. This technical report summarizes historical and scientific progress that provides a basis for understanding why, when, and how SLPs participate in interdisciplinary teams that are responsible for evaluating and managing the needs of persons with MR/DD. This report specifically addresses the speech and language needs of persons with MR/DD. Although many individuals with developmental disabilities have deficits in hearing, feeding, and swallowing functions for which SLPs may provide services, evaluation and management strategies for these functions are beyond the scope of this report. Further information on these important topics is available in other ASHA Technical Reports (ASHA, 2001a, 2002). The Roles and Responsibilities of Speech-Language Pathologists Serving Persons With Mental Retardation/Developmental Disabilities: Guidelines document was developed by the committee to provide further information and guidance on the implementation of the roles and responsibilities outlined in the position statement (ASHA, in press-c). Further, the recommended Knowledge and Skills Needed by Speech-Language Pathologists Serving Persons With Mental Retardation/Developmental Disabilities are presented in a companion document (ASHA, in press-a).

In this technical report, a historical perspective is provided to show a context for the principles that represent societal, legal, and philosophical perspectives on MR/DD. Over the past 30 years, the lives of individuals with mental retardation and other developmental disabilities have changed dramatically. Significant progress has been made in understanding the potential of these individuals to participate more fully and function more independently in schools, jobs, and communities. As we continue to discover new strategies and to capitalize on the blending of effective strategies to better serve this population, we are sure to witness greater contributions and improved quality of life among individuals with MR/DD. This report summarizes current scientific knowledge and recommended practices that are most critical to serving persons with MR/DD. For further information on teaming, identification and eligibility, assessment and goal setting, intervention, advocacy and education, and research, please consult the ASHA guidelines for serving persons with MR/DD (ASHA, in press-b) document.

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Terminology and Prevalence

The terminology used to refer to persons with developmental disabilities has undergone many revisions and is defined differently by various organizations. Issues related to diagnostic labels are discussed in the MR/DD service delivery guidelines (ASHA, in press-b). Developmental disability is defined in PL 106-402 (2000) as a severe, chronic disability of an individual, with an onset before 22 years of age, that results in substantial functional limitations in three or more areas of life activity. It can be attributable to mental or physical impairment, so intellectual limitations are not necessarily associated with a developmental disability. Mental retardation is generally considered to be a subset of the larger category of developmental disability (Batshaw, 2002). Commonalities in various systems for diagnosing mental retardation include onset in childhood and presence of intellectual limitations. 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). More severe impairments are more likely to result in early identification of a developmental disability (Daily, Ardinger, & Holmes, 2000).

The National Center on Birth Defects and Developmental Disabilities estimates that about 17% of U.S. children under 18 years of age have a developmental disability; approximately 2% of school-aged children in the United States have a serious developmental disability, such as mental retardation or cerebral palsy. The prevalence rate for identified mental retardation is much less. It is estimated to be about 1.2%, which is about half of the 2.5% predicted by the normal distribution model (Centers for Disease Control and Prevention, 2004; McLaren & Bryson, 1987; Roeleveld, Zielhuis, & Gabreels, 1997; Yeargin-Allsopp, Murphy, Oakley, & Sikes, 1992).

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Historical Perspective

Prior to the 1960s, private agencies and federal and state governments showed little interest in services for individuals with MR/DD. Few professionals were employed to provide speech, language, hearing, feeding, and swallowing services to individuals with mental retardation. The prevailing attitude was that individuals with intellectual disabilities did not benefit from such services (Matthews, 1957, 1971; Perkins, 1971; West, Kennedy, & Carr, 1947). Federal support for research and training in MR/DD, as well as legislation leading to deinstitutionalization, began to recognize the rights and potential of individuals with MR/DD. These governmental actions both reflected and facilitated a broader attitudinal change toward the role of individuals with MR/DD in society. The following sections explore changes that led to significant advances in service delivery for this population.

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History of Federal Programs Supporting Research and Training in MR/DD

During the administrations of Presidents John Fitzgerald Kennedy and Lyndon Baines Johnson (1960–1968), the New Frontier and Great Society programs, as well as the growing “community conscience” of the American people, fostered the notion that individuals with disabilities should receive more services. As perceptions began to change, legislation and philanthropic foundations provided funds to explore the needs, nature, and suitability of services for this population. In 1967, Congress authorized funds for the Bureau of Education for the Handicapped (BEH) within the Department of Health, Education, and Welfare. Through BEH and subsequent programs in the U.S. Department of Education (Office of Special Education & Rehabilitative Services), funds were allocated to the states to develop and provide educational programs for individuals with handicaps.

Several critical federal programs began funding research and training focusing on MR/DD in the early 1960s. The Association of University Centers on Disabilities (AUCD) (formerly the American Association of University Affiliated Programs for Persons with Developmental Disabilities) is a 501(c) nonprofit organization that promotes and supports the national network of university centers on disabilities, which includes Mental Retardation and Developmental Disabilities Research Centers (MRDDRCs), University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs), and Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs. These centers are among the institutions who prepare personnel to conduct and disseminate quality research advancing our knowledge of MR/DD. Investigators in these centers and programs are engaged in a very important mission—training the next generation of scientific investigators and clinicians.

MRDDRCs are a national resource that grew out of a congressional mandate in 1963 to establish centers of excellence in MR/DD research. About 14 centers represent the nation's sustained effort to prevent and treat disabilities through biomedical and behavioral research. Today, MRDDRCs represent the world's largest concentration of scientific expertise in the fields of intellectual and developmental disabilities. MRDDRCs are located within premier research universities and/or are affiliated with major medical centers that provide academic and scientific expertise as well as institutional support. MRDDRC activities represent a multidisciplinary, vigorous, and innovative research agenda on developmental disabilities. Although a significant portion of the research portfolios at the centers consist of basic studies that are fundamental to an understanding of the biological and behavioral processes in animal models and human participants, each center directs considerable attention toward seeking solutions to practical issues and problems. The scope of the research conducted at the centers encompasses every major dimension of mental retardation.

UCEDDs were first authorized in October 1963, when President Kennedy signed Public Law 88-164 and Public Law 88-156. Kennedy created the President's Panel on Mental Retardation, which crafted a comprehensive and multifaceted report on the disability field. The concept of University Affiliated Facilities (now UCEDDs) for interdisciplinary training came from the recommendations of this report. Availability of federal funds provided the impetus for institutions of higher education to advocate for persons with MR/DD, to provide clinical services, and to prepare clinicians and researchers. There are more than 60 UCEDDs, with at least 1 in every state and territory in the United States, that are part of the AUCD.

LEND programs were established in 1993 by the Maternal & Child Health Bureau to provide long-term, graduate-level interdisciplinary training to health professionals. The purpose was to develop leadership potential to improve the health status of infants, children, and adolescents with or at risk for neurodevelopmental and related disabilities, and to enhance the systems of care for these children and their families. The programs focus on health conditions of mental retardation, neurodegenerative and acquired neurological disorders, and multiple handicaps. All LEND programs operate within a university system and have collaborative arrangements with local university hospitals, children's hospitals, and/or health care centers. In 2004, 36 LEND programs in 29 states provided critically needed leadership and clinical training to professionals. LEND programs emphasize leadership development in their trainees and produce leaders for interdisciplinary treatment of children with developmental disabilities. Thus, the LEND programs are another part of the AUCD network that seeks to improve the lives of persons with developmental disabilities and their families.

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Legal Advances and Deinstitutionaliz­ation

The 1970s saw the initiation of many critical advances in laws governing delivery of services to individuals with disabilities. Collectively, these laws, highlighted in Table 1, mandated far-reaching changes in services by prohibiting discrimination against individuals with disabilities and requiring the provision of needed services in the least restrictive environment. As a result, people of all ages with developmental disabilities are now eligible for speech, language, hearing, feeding, and swallowing services in diverse facilities where such services were previously not available.

Table 1. Summary of federal laws responsible for changes in services for persons with MR/DD.

1975 The Education for All Handicapped Children's Act (PL 94-142)
  • Mandated free public education for all handicapped children in the least restrictive environment

1978 Rehabilitation, Comprehensive Services, & Developmental Disabilities Amendments of 1978 (PL 95-602)
  • Substituted a functional definition of developmental disabilities

  • Provided funding for independent living centers

1990 The Americans with Disabilities Act (ADA) of 1990 (PL 101-336)
  • Provided civil rights protection to persons with disabilities in the area of employment, public accommodations, government services

  • Prohibited discrimination on the basis of disabilities

1994 Developmental Disabilities Assistance and Bill of Rights Act Amendments (PL 103-230)
  • Provided assistance to ensure that all persons with developmental disabilities receive the services, assistance, and opportunities necessary to enable them to achieve their maximum potential

  • Enhanced the role of the family in assisting persons with developmental disabilities

1994 Technology-Related Assistance for Individuals with Disabilities Act Amendments of 1994 (PL 100-407 & PL 103-218)
  • Provided financial assistance to states to support technology-related assistance for individuals with disabilities.

1997 Policy Directive of the Federal Rehabilitative Services Administration (RSA PD 97-04 of the Department of Education)
  • Required state agencies to approve vocational goals and services to enable persons with disabilities to maximize their employment potential.

1997 The Individuals with Disabilities Education Act Amendments of 1997 (PL 105-71)
  • Required that states provide a free and appropriate public education to children ages 3–21 years old who have a disability

  • Special education and related services provided at public expense and in the least restrictive environment.

The legal changes and the process of deinstitutionalization have each had an impact both on where individuals with MR/DD reside and where their educational services are provided. The legal mandate that services should be provided in the “least restrictive environment” was initiated in 1975, with the adoption of Public Law 94-142. This legislation provided the impetus for serving most school-aged individuals with MR/DD within public school settings. Subsequent legislation has emphasized service delivery in natural environments that include typical peers. This has implications across the life span as many adults with MR/DD transition into community-based living settings.

In 1996, an estimated 3.17 million people in the United States had developmental disabilities (Braddock, 1999). Of these 3.17 million, 60% lived with a caregiver, 15% lived with a spouse, 13% lived in their own household, and 12% lived in a residential facility. Of those living with a caregiver, 40% were under 41 years of age, 35% were between the ages of 41 and 59, and 25% were over 60 years old (Braddock, 1999).

Public spending for MR/DD services rose from $8.84 billion in 1977 to $29.3 billion in 2000, reflecting a change from institution-based service systems to community-based service systems (Hemp, Parish, Braddock, & Smith, 2001; Hemp, Rizzolo, & Braddock, 2002). Between 1977 and 2000, the number of individuals with MR/DD living in large state facilities declined from 151,112 to 47,329 (Smith, Prouty, Polister, Kwak, & Lakin, 2001). The percentage of children in these facilities (ages 0–21 years) declined from 35.8% to 4.5%, while the percentage of adults between the ages of 40 and 62 years rose from 19.2% to 52.7% (Smith et al., 2001). Over this period, residents of state facilities were increasingly likely to have severe impairments or coexisting psychiatric conditions (Smith et al., 2001).

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Philosophical Perspective: Rights of Persons With MR/DD

The legislative changes discussed above were critically important in altering the legal status of individuals with MR/DD. They reflected and stimulated general social and institutional acceptance of the rights of persons with MR/DD (National Joint Committee for the Communicative Needs of Persons with Severe Disabilities, 1992). These changes over the last 30 years have resulted in (a) a new level of respect for the person beyond the disability, (b) recognition of the importance communication plays in making choices and life decisions for individuals with MR/DD, (c) increased access or eligibility for services regardless of cognitive functioning, (d) involvement of families in the assessment and program-planning process, (e) services that are individualized and appropriate, (f) inclusion of culturally and linguistically appropriate practices in the assessment and intervention planning for individuals with MR/DD from diverse groups, (g) opportunities for interactions with a variety of individuals in natural environments, and (h) knowledge of prevention practices. Each of these rights for individuals with MR/DD leads to principles that guide the roles and responsibilities of SLPs in their service provision to persons with MR/DD.

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Respect

Principle: SLPs play an important role in promoting communication abilities that further the independence and self-advocacy of persons with MR/DD.

One of the major shifts in the early 1980s was a move toward “person-first” language, reflecting the idea that the disability does not define the person. Terms like individuals with mental retardation and/or individuals with intellectual disability have replaced the older terms of mentally retarded persons or the mentally retarded.

In addition, professionals and advocates of people with mental retardation sought to balance discussions of limitations of individuals with MR/DD with an equal emphasis on their skills. Consequently, language and philosophy concerning MR/DD began to focus on levels of support necessary to maximize an individual's ability, rather than simply on deficits in functioning (American Association on Mental Retardation, 2002). This new emphasis is reflected in the evolution of the definition of mental retardation offered by the American Association on Mental Retardation (AAMR) and is discussed in the Roles and Responsibilities of Speech-Language Pathologists Serving Persons With Mental Retardation/Developmental Disabilities: Guidelines document (ASHA, in press-b).

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Communication

Principle: Like all people, persons with MR/DD have a basic right to influence their life circumstances through communication.

The need to develop and maintain functional communication to maximize self-sufficiency in individuals with MR/DD has become even more critical in light of the fundamental principles underlying the legal and residential changes over the past 30 years. Greater communication demands are apparent as persons with MR/DD reside in the community and interact with peers. Functional communication skills are necessary to establish and maintain an adequate quality of life within the variety of community-based settings now being used as least restrictive environments.

Functional communication consists of far more than speech. Gestures, visual symbols, and early signs are valid means by which individuals can share thoughts, communicate needs, and establish social closeness. Substantial evidence supports the importance of early nonspeech communication behaviors in setting the stage for later language outcomes in both typically and atypically developing children (Bruner, 1983; Calandrella & Wilcox, 2000; McCathren, Warren, & Yoder, 1996, McCathren, Yoder, & Warren, 1999; McLean & Snyder-McLean, 1987; Mundy, Kasari, Sigman, & Ruskin, 1995; Paul, Looney, & Dahm, 1991; Thal & Tobias, 1992; Wetherby, Allen, Cleary, Kublin, & Goldstein, 2002). Nonspeech communication systems, and particularly augmentative and alternative modes, have allowed many individuals with even the most severe cognitive and communication needs access to functional communication (see Reichle, Beukelman, & Light, 2002; Romski & Sevcik, 1996).

Understanding the broad functions of nonspeech modes also has led to greater understanding of the potential communication functions of challenging behaviors (e.g., Reichle & Wacker, 1993). Common challenging behaviors include aggressive, disruptive, self-injurious, and stereotypic behaviors. Various service delivery models are now available to replace challenging or inappropriate behavior with socially acceptable communication behavior in individuals with diverse forms of developmental disabilities (Fox, Dunlap, & Buschbacher, 2000; Reichle & Wacker, 1993; Wacker, Berg, Harding, & Asmus, 1996). SLPs have an essential role in educating team members about the communication functions of such behaviors and developing methods for replacing them with other forms of communication behavior.

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Access/Eligibility

Principle: 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.

Eligibility is another area that has continued to evolve as the rights of individuals with MR/DD have been increasingly well-recognized (National Joint Committee for the Communications Needs of Persons with Severe Disabilities, 1992). Beginning with the Developmental Disabilities Services and Facilities Act of 1970 (PL 91-517), eligibility rules for service delivery for both MR and DD populations have undergone widespread change (e.g., Hauber, 1984; Kohlenberg et al., 1996; Whitney-Thomas, Timmons, Gilmore, & Thomas, 1999).

SLPs do not withhold services based on a priori criteria that preclude consideration of individual needs, preferences, and priorities for communication. Unfortunately, there are “eligibility” criteria commonly 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 (National Joint Committee for the Communication of Persons with Severe Disabilities, 2003a, 2003b). These criteria, which cause concern when applied without regard to individual needs, 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) is of special importance due to its widespread implementation. In many current situations, SLPs are not allowed to include persons with mental retardation on their active caseloads if measured language skills are commensurate with measured cognitive level. As many as 31 of the 50 state education departments require SLPs to consider a child's IQ score as well as language performance in determining eligibility for language intervention (Casby, 1992). This eligibility framework of “cognitive referencing” rests on the assumption that language skills cannot improve beyond cognitive ability. Cognitive referencing is not an appropriate criterion for eligibility decisions. The relation between language and cognition is complex (Rice & Kemper, 1984), so that measures of discrepancy have little reliability across time or across specific language and cognitive measures (Cole & Fey, 1996; Cole, Mills, & Kelly, 1994; Krassowski & Plante, 1997). Even more relevant is the finding that language intervention benefits children with MR/DD even when no language-cognition discrepancy exists (Carr & Felice, 2000; Cole, Dale, & Mills, 1990; Warren, Gazdag, Bambara, & Jones, 1994; see ASHA, 2004a [Admission/Discharge Criteria in Speech-Language Pathology]). In two studies comparing the response to intervention of children with and without cognitive delays who had unmet communication needs, the children with cognitive delays actually made greater gains in response to language intervention than did children with cognitive skills developed above their language ability (Cole, Coggins, & Vanderstoep, 1999; Fey, Long, & Cleve, 1994). Thus, the cognitive referencing model is an unstable predictor of children's ability to benefit from language intervention, and it may at times predict in the wrong direction. These inappropriate substantive criteria for excluding individuals from services must be addressed by educating decision makers through advocacy efforts.

Another source of inappropriately reduced access to services is resource limitations. However, the lack of trained personnel or a lack of adequate funds or other resources does not justify denial of services. It is inappropriate for persons with MR/DD to dis-proportionately experience reduced services.

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Family-Centered Services

Principle: SLPs ensure that decisions about team members, service delivery models and settings, and how services are delivered are based on the individual needs and preferences of persons with MR/DD and their families. Families and persons with MR/DD are integral to the assessment process and are pivotal decision makers in determining specific goals and objectives and how clinical services should be provided.

SLPs have recognized the essential role that families play in all aspects of service, from assessment through implementation. Families are considered here from a life span perspective. Therefore, “family” may include parents, guardians, spouses, and caregivers. Family members have unique expertise and insight to offer that cannot be obtained through formal or informal testing by a professional, no matter how skilled. Family-centered practices provide the support and resources families need to promote children's development and create meaningful learning opportunities (Dunst, 1999; Trivette & Dunst, 2000; Trivette, Dunst, & Hamby, 1996). Further, involving the families in the care of their children improves health and developmental outcomes, enhances the learning of children with special needs, and increases satisfaction among providers (Eichner & Johnson, 2003; Horst, Werner, & Werner, 2000; Hutchfield, 1999; Letourneau & Elliott, 1996; Thies & McAllister, 2001). Family-centered service models have been implemented with success (e.g., Prelock, Beatson, Contompasis, & Bishop, 1999) and are discussed further in the ASHA MR/DD guidelines (ASHA, in press-b). As persons with MR/DD mature, adults with MR/DD should experience an increased role in decision making in identifying services that are needed to enhance communication functioning, often in conjunction with their changing “family” constellation.

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. Therefore, families become key decision makers and are recognized and valued for the knowledge and skills they bring to program planning and implementation (Arango, 1999; Cooley & McAllister, 1999; Dunst, Trivette, & Deal, 1994).

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Individually Appropriate Services

Principles: SLPs select assessment and intervention goals that have a meaningful impact on social, behavioral, emotional, academic, and vocational functioning within a variety of settings (e.g., residential, school, community, and work settings).

Consequently, team members and SLPs adapt their service delivery to changes in the strengths, needs, preferences, and priorities for communication in persons with MR/DD and their changing life circumstances.

The group of people designated as “persons with MR/DD” is not homogeneous. Behavioral profiles across individuals or even etiologies are not similar or predictable from the diagnostic category (e.g., Dykens, Hodapp, & Finucane, 2000). Like all individuals, people with MR/DD are unique and possess their own personal likes, dislikes, strengths, and needs, which can change over time and across living environments (Zigler, 2001). Recognition and measurement of individual variability in personality across individuals, etiologies, or diagnostic categories are essential to understanding and responding to clients with mental retardation as functioning individuals (Zigler, 2002; Zigler, Bennett-Gates, Hodapp, & Henrich, 2002). The increasing recognition of the unique contributions of individuals with disabilities in deciding issues of care and service is well exemplified in the “self-determination” movement (Malian & Nevin, 2002). Personality characteristics likely play an important role in the outcomes of such self-determined decision making, including those made by people with MR/DD (e.g., Switzky, 2001). Further, adaptation of service provision to the rich contexts in which individuals with MR/DD are now included is essential in light of the shift from residential services to community settings and the mandate to educate individuals with MR/DD within the least restrictive environment (e.g., Nevin, Malian, & Williams, 2002). SLPs recognize the importance of individual variability, including personality differences, among individuals with the diagnosis of MR/DD.

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Culturally and Linguistically Appropriate Services

Principle: SLPs provide communication assessment and intervention services and supports that honor and adapt to differences in families, cultures, languages, and resources.

The critical notion of culture and its contributions to the construct of “retardation” have been increasingly realized since the 1980s (Manion & Bersani, 1987). One important insight is the idea that what is behaviorally normative within one culture may not reflect the norms of another culture. In light of the increasing emphasis on adaptive behavior as an essential component of identification, it becomes essential to consider differences in expectations about what constitutes normative or atypical behavior. Using a culturally appropriate frame of reference in assessment and diagnosis has become an explicit component of the AAMR (2002) definition of mental retardation.

A further variable that is of ever-increasing importance in the United States is the problem of over- or underidentification due to the increasing linguistic diversity within the population. With increasing numbers of Limited English Proficiency (LEP) students entering school in the United States, it is crucial that SLPs have the knowledge and skills required to deliver appropriate services to these populations in general and to people with MR/DD in particular. Given the absence of tests specifically designed for many culturally and linguistically diverse populations, this problem will only increase. For both of these reasons, SLPs need to be aware of the critical importance of cultural considerations in identifying adaptive functioning as well as assessment and treatment goals. Service delivery decisions are made based on the individual's communication needs relative to their family, community, school, or work settings.

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Inclusive Settings With Typical Peers

Principle: Communication intervention focuses on the context of interactions with the variety of individuals that persons with MR/DD encounter in their natural environments.

A variety of intervention strategies have been empirically validated, mainly with children in classroom and home settings, including incidental language teaching, enhanced milieu treatment, environmental arrangement, caregiver-child responsive interactions, response prompting and shaping, mand-model procedures, time delay, and the use of specialized materials (Hepting & Goldstein, 1996). Teaching communication in the context of children's natural environments has several advantages. Typical peers serve as models for appropriate communication skills (Goldstein, English, Shafer, & Kaczmarek, 1997; Goldstein & Kaczmarek, 1992; Guralnick, 1976; Guralnick & Paul-Brown, 1989; Paul-Brown & Caperton, 2001). Furthermore, typical peers have been shown to be quite effective when taught strategies to promote social communication in classmates with MR/DD (Goldstein & Cisar, 1992; Goldstein & Gallagher, 1992; Guralnick, 1990, 1994, 2001; Guralnick & Neville, 1997; Strain & Kohler, 1998). SLPs can take advantage of the high motivation inherent when individuals are requesting desired items and activities present in the natural environment. This approach can capitalize on the numerous teaching and learning opportunities that occur throughout the day within a variety of routines and activities. Although the bulk of this research has been conducted with children, these principles can be applied across the life span (Fryxell & Kennedy, 1995; Hughes, 1999; Kennedy, Cushing, & Itkonen, 1997; Newton & Horner, 1993; Newton, Olson, Horner, & Ard, 1996; Shukla, Kennedy, & Cushing, 1999; Souza & Kennedy, 2003). SLP services are thus likely to involve teaching caregivers, teachers, and others to embed communication intervention strategies at childcare, school, or job settings; in the car, yard, laundromat, or doctor's office; at the park or the soccer game; at home, grandma's house, or the neighbor's house; or anywhere families go (Woods-Cripe & Venn, 1997). Finally, teaching in natural environments lessens the need to program for generalization from clinical settings to classroom, home, vocational, and community settings and communication partners.

Although there are few studies targeting adult peer interactions, those that exist reinforce the need for ongoing support and highlight the utility of programs designed to enhance interactions among adults. Studies that have evaluated the naturally occurring socialization patterns of adults with MR/DD illustrate the need for ongoing support. For instance, although adults with MR/DD engage in a core group of community leisure activities, the number of such activities is fewer for these individuals than for matched adults without disabilities (Hoge & Datillo, 1995). Importantly, the nature of peer relationships may vary as a function of supports available. In several studies, individuals with mild levels of intellectual disability who received services were reported to have friends and engage in social activities, although most if not all of those friends were other individuals with MR/DD rather than nondisabled individuals (Koller, Richardson, & Katz, 1988; Rosen & Burchard, 1990). Adults who were not receiving services any longer had fewer friends and socialized less often than nondisabled individuals (Koller et al., 1988). These studies highlight that enriched social functioning may not occur without support for adults with MR/DD.

Interventions designed to enhance peer interactions in the settings in which adults live, work, or socialize have demonstrated that continued support can lead to enriched social functioning. For example, Hooper (2001) described the utility of music therapy to encourage peer interactions among four room-mates with MR/DD. Improved interactions in the workplace resulted from interventions, such as job coaching, partner training, social facilitation, and creation of a communication device (Mautz, Storey, & Certo, 2001). Peer interaction is therefore a lifespan issue, and programming to enhance such interactions is as important for adults as it is for children and adolescents.

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Prevention

Principle: SLPs provide preventive services and advocate for appropriate communication services for persons with MR/DD through the life span.

SLPs take seriously their role as advocates for people with MR/DD, including their role in prevention of communication impairment. Prevention is included within the ASHA scope of practice and preferred practice patterns for SLPs and audiologists (ASHA, 1997, 2001b, 2004b, 2004c). A tutorial document from ASHA (1991) outlines ways to develop prevention efforts. Levels of prevention have been categorized into primary, secondary, and tertiary prevention (ASHA, 2000).

Primary prevention entails “the elimination or inhibition of the onset and development of communication disorder by altering susceptibility or reducing exposure for susceptible persons” (ASHA, 2000, p. 17). SLPs may be involved in educational efforts through their participation at PTA meetings, health fairs, and other forums. Topics relevant to preventing mental retardation and developmental disabilities include information about prenatal care, immunizations, lead exposure, drug and alcohol exposure, and the need for genetic counseling for families with a history of Fragile X and other syndromes.

Secondary prevention is the early detection and treatment of communication disorders. “Early detection and treatment may lead to the elimination of the disorder or the retardation of the disorder's progress, thereby preventing further complications” (ASHA, 2000, p. 18). SLPs can optimize communication development through activities such as child find services for early identification of children with MR/DD as well as advocate for increased opportunities for children with MR/DD to participate in child care programs with typical children. SLPs may provide information to community professionals about the communication challenges people with MR/DD face in school and the community, about potential benefits of augmentative and alternative communication systems, and about identification and management issues associated with LEP.

Tertiary prevention is the reduction of a disability by attempting to restore effective functioning through rehabilitation. This is the traditional role of the SLP providing services to persons with MR/DD to achieve optimum communication functioning. The SLP is preventing associated problems (e.g., challenging behavior, academic failure) that may result from a communication disorder. Tertiary prevention for persons with MR/DD does not mean automatic service provision based on etiology alone. A range of performance can be expected for each etiological category and only careful assessment will reveal the nature of the communication challenges and suggest productive intervention approaches.

Paul (2001) included an additional category, preventive intervention (sometimes subsumed under secondary prevention), which focuses on early intervention for children who are at high risk of communication disorders because of specific biological, environmental, or behavioral conditions. Risk factors such as teenage motherhood, drug exposure of the fetus, or preterm birth with low birth weight may provide justification for the SLP to provide or refer families for services. Preventive intervention services include attending community classes on parenting, parent-baby play groups, or more intensive training on strategies for promoting child development, social interaction, or responsive communication. New screening procedures are being developed for a variety of genetic and metabolic conditions in newborns precisely so that early interventions can be implemented to prevent long-term disability. For example, SLPs and rehabilitation audiologists are being involved in preventive intervention as they are asked with increasing frequency to serve families of children with significant hearing impairments, as states are implementing newborn hearing screening programs. Preventive intervention addresses risk factors that may exacerbate poor developmental outcomes in persons with MR/DD.

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Conclusion

Over the past 30 years, the lives of persons with MR/DD have changed dramatically. Public laws regarding equal access to education and individualized family and educational plans have reshaped educational outcomes, increasing opportunities for employment and independent living. Research on communication continues to uncover ability and learning potential. Research has shifted from studies of mental retardation as a classification to studies of specific etiologies documenting unique learning profiles for different syndromes, continued communication development beyond adolescence, and changes associated with intervention into adulthood (Abbeduto, 2003).

Public perception of persons with MR/DD also is changing, providing a community environment of respect that will certainly lead to more opportunities for community integration. The importance of communication in decision making and life choices is recognized. Access to individualized services that are culturally and linguistically appropriate regardless of cognitive ability is improving and family participation in assessment and treatment planning is required. Community based living provides more opportunity for communicating with a variety of individuals, improving the quality of life and offering new learning opportunities. In 30 years, residential facilities have emptied, spawning new educational and community programs, employment opportunities, and more independent living options. We are just beginning to understand the potential of persons with MR/DD when educational and community access is optimal. Perhaps the next 30 years will produce equally dramatic advances in opportunities for persons with MR/DD to thrive in our society.

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References

Abbeduto, L. (2003). Language and communication in mental retardation. New York: Elsevier/ Academic Press.

American Association on Mental Retardation. (2002). Mental retardation: Definition, classification, and systems of support (10th ed.). Washington, DC: Author.

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Index terms: mental retardation, developmental disorders, intellectual disabilities

Reference this material as: American Speech-Language-Hearing Association. (2005). Principles for speech-language pathologists serving persons with mental retardation/developmental disabilities [Technical Report]. Available from www.asha.org/policy.

© Copyright 2005 American Speech-Language-Hearing Association. All rights reserved.

Disclaimer: The American Speech-Language-Hearing Association disclaims any liability to any party for the accuracy, completeness, or availability of these documents, or for any damages arising out of the use of the documents and any information they contain.

doi:10.1044/policy.TR2005-00144

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