Communication Interventions for Individuals with Severe Disabilities

Exploring Research Challenges and Opportunities

Rose A. Sevcik, MaryAnn Romski, Rose A. Sevcik, MaryAnn Romski

• Publisher: Brookes Publishing
• Year: 2016
• Print ISBN: 9781598573633
• eBook ISBN: 9781681250892
• Topic: Education
• Subtopic: Inclusive Education

What does the latest research tell us about communication interventions for people with severe disabilities? Find out in this authoritative research volume, which investigates the effectiveness of today's communication interventions, synthesizes evidence from current studies, and identifies urgent research directions for the future.

Shaped by a conference of The National Joint Committee on the Communication Needs of Persons with Severe Disabilities (NJC), * this interdisciplinary book includes contributions from more than 30 top scholars from diverse fields, including psychology, special education, and speech-language pathology. Each chapter gives readers a brief summary of research studies on a key intervention topic, insights on research design and measurement challenges, thoughts on future advances, and real-world clinical and educational recommendations. Essential for the reference libraries of educators and professionals, this book offers powerful insights about today's communication interventions—and sets a clear agenda for tomorrow's groundbreaking research.

TOPICS COVERED:

• prelinguistic communication intervention for young children with intellectual disabilities
• challenging behavior and communicative alternatives
• interventions for children who are deafblind
• augmented language interventions for children with severe disabilities
• parents as partners in communication intervention
• the role of cultural, ethnic, and linguistic differences
• targeted and phenotypic communication interventions for children with Down syndrome or ASD
• issues related to research study design, including sample size, the effectiveness of randomized controlled trials, and integration of single-case and group designs
• assessment and measurement of communication and language skills in individuals with severe intellectual disabilities
• and more

*The NJC conference was funded by the National Institute on Deafness and other Communication Disorders.

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Communication Interventions for Individuals with Severe Disabilities

What Is the Evidence?

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1

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What Is the State of the Evidence?

Nancy C. Brady, Martha E. Snell, and Lee K. McLean

Research is urgently needed to promote identification and implementation of effective communication interventions for individuals with severe intellectual and developmental disabilities (IDD). One of the long-standing goals of the National Joint Committee (NJC) for the Communication Needs of Persons with Severe Disabilities has been to promote research that will lead to additional communication resources. This chapter summarizes events leading up to this conference and the current state of the evidence regarding communication practices for individuals with severe intellectual and developmental disability (IDD).

BACKGROUND

In 1984, the Council of Language, Speech, and Hearing Consultants in State Education Agencies initiated efforts to develop national guidelines for developing and implementing educational programs to meet the needs of children and youth with severe communication disabilities. These efforts culminated in a national symposium, Children and Youth with Severe Handicaps: Effective Communication that was jointly sponsored by the U.S. Department of Education’s Office of Special Education Programs (OSEP) and the Technical Assistance Development System (TADS) of Chapel Hill, North Carolina. This symposium was held August 19–21, 1985, in Washington, D.C. and involved professionals from state and local education agencies and universities across the nation—most of whom were directly involved in developing or implementing communication intervention programs for children and youth with severe disabilities.

The product of this symposium consisted of 33 consensus statements that put forth basic assumptions and recommendations to the planning and provision of appropriate services to meet the communication needs of children with severe disabilities. Some of these consensus statements reiterated philosophical and action statements in the Education for All Handicapped Children Act of 1975 (PL 94-142); others added texture and specifics to actions detailed in the law. The symposium participants recognized the need for interdisciplinary efforts in this overall service domain. One of the symposium recommendations was that the American Speech-Language-Hearing Association (ASHA) and The Association for Persons with Severe Handicaps (TASH) coordinate an interagency task force for the preparation and dissemination of statements that set forth the parameters for the development and enhancement of functional communication for severely handicapped children and youth (terminology used in original documents). In 1986, ASHA and TASH organized a joint committee to focus on the communicative needs of children and adults with severe disabilities and issued invitations to other organizations to appoint representatives to this new NJC for the Communication Needs of Persons with Severe Disabilities.

The purpose of the NJC is to advocate for individuals with significant communication support needs resulting from intellectual disability and often coexisting with autism and sensory and/or motor limitations. The committee consists of representatives from ASHA, American Association on Intellectual and Developmental Disabilities (AAIDD), American Occupational Therapy Association (AOTA), American Physical Therapy Association (APTA), Association of Assistive Technology Act Programs (AATAP), Council for Exceptional Children Division for Communicative Disabilities and Deafness (CEC-DCDD), Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), TASH, and the United States Society for Augmentative and Alternative Communication (USSAAC). The interdisciplinary composition of this committee reflects the pervasive importance of communication in all spheres of human functioning and across traditional boundaries. The shared commitment to promoting effective communication by people with severe disabilities provides a common ground on which the disciplines represented by the member organizations can unite in their efforts to improve the quality of life for all.

The first task of the NJC was to translate basic assumptions and recommendations reflected in the consensus statements issued by the OSEP/TADS 1985 symposium into a set of practice guidelines. The NJC identified the specific focus of these guidelines as pertaining to all people with severe disabilities, including people with severe to profound intellectual disabilities, autism, and other disorders, that result in severe socio-communicative and cognitive-communicative impairments. Representatives from all the constituent associations of the NJC met and worked together for several years to arrive at meaningful guidelines that reflected the 1985 consensus statements, including current values, intervention practices, and knowledge bases specific to the treatment of communicative impairments among people with severe disabilities. The practice recommendations presented in these guidelines reflected what were then considered best or recommended practices. The resulting document was then submitted to all constituent organizations for review (including widespread peer review by their members). After review and endorsement by all members, these guidelines were published in 1992 (ASHA, 1992) and has recently been updated (Brady et al., in press). The NJC included a Communication Bill of Rights, which has since been disseminated as a free-standing and powerful statement used by individuals and organizations to advocate for communication rights and services, as a part of these guidelines (see Box 1.1). The Communication Bill of Rights also has been updated (Brady et al., in press).

The committee underscored the need for such guidelines by stating that there were approximately 2 million Americans who were unable to speak or who demonstrated severe communication impairments. That figure would climb to more than 3 million based on estimates of 1% of the population having this degree of impairment. In light of this steady increase in population, there is a shortage of trained personnel to serve individuals with complex communication needs. Few personnel preparation programs address the communication needs of people with severe disabilities (Costigan & Light, 2010).

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Box 1.1. Communication Bill of Rights

All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. All people have the following specific communication rights in their daily interactions. Each person has the right to

Request desired objects, actions, events, and people

Refuse undesired objects, actions, or events

Express personal preferences and feelings

Be offered choices and alternatives

Reject offered choices

Request and receive another person’s attention and interaction

Ask for and receive information about changes in routine and environment

Receive intervention to improve communication skills

Receive a response to any communication, whether or not the responder can fulfill the request

Have access to augmentative and alternative communication (AAC) and other assistive technology (AT) services and devices at all times

Have AAC and other AT devices that function properly at all times

Be in environments that promote one’s communication as a full partner with other people, including peers

Be spoken to with respect and courtesy

Be spoken to directly and not be spoken for or talked about in the third person while present

Have clear, meaningful, and culturally and linguistically appropriate communications

From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3.

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Materials to help guide instruction on assessments and interventions for people with severe IDD are needed, even when training programs exist. One of the goals for the NJC has been to develop tools that can help support interventions that reflect the NJC guidelines. After a 1992 OSEP symposium on effective communication for children and youth with severe disabilities, the NJC recognized the need to translate its guidelines into a functional tool—a communication supports checklist that programs could use to improve communication supports and services for people with severe disabilities (McCarthy et al., 1998). Although out of print, the communication supports checklist was used by many teachers and therapists to identify and implement interventions that reflected the NJC guidelines. The NJC developed additional educational materials that included conference presentations and an ASHA videoconference promoting communication assessments and interventions. Members of the NJC presented a webinar specifically about working with communication partners to promote communication (http://www.asha.org/Events/aac-conf/default). The organization’s web site also contains a section on topics under the themes of Accessing Services and Intervention Issues and Practices (http://www.asha.org/njc).

The NJC also addressed inappropriate practices by publishing a position paper and discussion paper refuting restrictive eligibility policies and practices (NJC, 2003; Snell et al., 2003). The NJC made clear that there is no evidence to support restricting communication services based on achieving either cognitive or language milestones. Rather, it is the view of the NJC that evidence supports providing communication services based on communication needs. If an individual demonstrates a need to improve communication in order to improve his or her functioning within current and likely future environments, then he or she should be considered eligible to receive services.

Most of the materials presented were based on ideals and a limited set of research studies, usually based on small numbers of participants. Since the mid-2000s, numerous calls for increased use of evidence-based practices have been issued across all types of communication disorders (Dollaghan, 2007; Nippold, 2011; Whitmire, Rivers, Mele-McCarthy, & Staskowski, 2014). These reports described how to document or demonstrate that interventions met standards of evidence-based practices (e.g., Kratochwill et al., 2013), with a goal of facilitating practitioners’ abilities to identify evidence-based practices in the literature and then implement these interventions in practice. Like all areas of communication intervention, there is a need to identify and promote evidence-based practices for individuals with severe disabilities. In addition, it is necessary to consider innovative research strategies to provide this evidence because of the extremely low incidence of the most severe IDD (which, in turn, makes it more difficult to find sufficient participants for most formal analyses). Members of the NJC realized that an examination of the existing research was necessary in order to strengthen its positions regarding services for individuals with severe ID and promote innovative research strategies.

EVIDENCE SUPPORTING INTERVENTIONS FOR PEOPLE WITH SEVERE INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

The NJC published an article in 2010 that summarized intervention research completed over the previous 20 years with individuals with severe IDD (Snell et al., 2010). The committee members applied six criteria in conducting the literature search; articles that qualified 1) were published in peer-reviewed journals between 1987 and 2007, 2) were written in English, 3) had participants with severe IDD, 4) constituted intervention studies addressing language or literacy outcomes, 5) contained original data, and 6) were not case studies. The authors used four steps to locate research articles meeting these six criteria. The initial step used 13 electronic databases, and 31 sear...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• About the Editors
• About the Contributors
• Foreword Leonard Abbeduto
• Preface
• Acknowledgments
• Dedication
• I. Communication Interventions for Individuals with Severe Disabilities: What Is the Evidence?
• II. Challenges for Communication Intervention Research: Design Methods Issues
• III. Challenges for Communication Intervention Research: Measuring Outcomes
• IV. The Future
• Index