November 22, 2011 Features

Answers to Your Biggest Questions About Services for People With Severe Disabilities

Significant advances in social, legal, vocational, technological, and educational domains have improved the quality of life of many people with severe intellectual and developmental disabilities (IDDs). Thanks in large part to parent advocacy and government and legal mandates, most of these individuals have been transitioned out of large residential institutions. All have the right to access clinical, educational, health, and other services (see ASHA, 2005, for an account of these changes, and Wilkinson, 2006, for a historical overview).

A critical component of service provision for people with IDDs is communication intervention (see "Communication Tools for Helping People With Severe Disabilities" below). Unfortunately, gaps persist in the provision of effective, evidence-based communication services for this population. Indeed, people with IDDs often are excluded from these services due to their poorly understood learning support needs. Particularly in the case of older individuals, services often are not considered after a certain point, perhaps because of a history of failed interventions and because significant change seems more difficult to achieve. This practice is suspect, however. Prior failure may be largely irrelevant to whether or not a contemporary approach can impart communication skills efficiently and effectively.

The remaining clinical challenges in service provision are evident in the ever-growing section of frequently asked questions (FAQs) on the website of the National Joint Committee for the Communication Needs of Persons With Severe Disabilities (NJC), an interdisciplinary group of professionals working to optimize services for individuals with severe disabilities (see "Communication Tools for Helping People With Severe Disabilities" below).

FAQs: Service Challenges and Solutions 

The NJC developed the FAQs to provide basic information for consumers, families, professionals new to the area of severe disabilities, or any professional looking for ways to inform consumers. More in-depth responses also are available with detailed information, research summaries, and references.

The FAQs can be organized into three overarching, interrelated categories, as illustrated in this diagram [PDF]:

  • Issues related to accessing services, including eligibility.
  • Issues related to intervention practice.
  • Funding issues in service delivery.

A few questions from each area are presented here to illustrate some of the most critical challenges—as well as their solutions—in contemporary practice. The information has been summarized from full answers to these and other questions on the NJC website.

Accessing Services and Eligibility 

Q: Is it too late to provide communication training after age 22?

The short answer is no. Communication supports, including intervention services, are just as critical to the lives of adults as they are for young children.

  • Transitions to new work and living environments in adulthood are likely to create a need for communication services to support development of communication forms and functions appropriate to new settings as well as to educate new communication partners about a person's communication forms and support needs.
  • Records indicating that an adult "did not benefit" in earlier years do not indicate inability to benefit from services in adulthood, because research has documented continued development of communication/language skills through young adult years. New approaches to intervention and advances in augmentative and alternative communication (AAC) technology offer a greater chance of success.

Bottom line: Communication is a lifelong activity of value to people of all ages. Intervention to facilitate effective communication is warranted for all ages.

Q: Some professionals from other disciplines are making recommendations about AAC and speech-generating devices. Is this okay?

This question touches on a number of important issues, including teaming, the necessary expertise to provide services, and scope of practice.

  • The guiding concern among team professionals must always be the best interest of the client.
  • Although there are some things that only the speech-language pathologist on a team is certified and licensed to do (and for which the SLP is the only professional eligible to receive insurance reimbursement), virtually all aspects of AAC service provision benefit from the insights of team members. Service provision for someone learning to use a speech-generating device should be interdisciplinary, as should services for all individuals.

Bottom line: The primary provider should be an individual with significant insight into language development, disorders, evidence-based practices, and AAC. Although SLPs often have the greatest expertise in these areas, professionals from other disciplines may have extensive knowledge as well.

Intervention Practices 

Q: What if the individual shows no interest in communication? 

"Lack of interest" may actually reflect lack of exposure to preferred activities or events. It is no surprise that a client is unmotivated to communicate if the available materials or activities are poorly matched to that client's interests. Clinicians have the responsibility to identify individual preferences and interests, and to tailor the communication supports accordingly.

  • The clinician must conduct preference assessments to identify a greater breadth of motivating activities. This information also can be solicited by interviewing an individual's caregivers.
  • The clinician follows up by providing the individual with opportunities to engage in the activities, and watching for signs of interest. These signs may be idiosyncratic, but are valid signals for the clinician to note.

Bottom line: A client's seeming lack of interest may actually indicate the professional's failure to identify activities in which the client is motivated to communicate. Clinicians should examine ways motivation can be enhanced and provide opportunities for communication.

Q: Why would an SLP work with a client who does not talk? 

Speech-language services are, in fact, desperately needed for clients who "don't talk." Individuals whose communication skills are at early or prelinguistic levels are especially vulnerable to limitations in all aspects of daily living, including social relationships with diverse partners (including peers), access to core educational curricular content, entrée to vocational possibilities, participation in community activities, self-advocacy, and access to appropriate health supports. It is the SLP's responsibility to explore ways all clients can communicate effectively, including those with the most significant communication challenges.

  • Some of the most critical of these goals are early communication and pragmatic skills. When clients learn to take turns appropriately, make eye contact, greet new people, or ask questions, they have formed the foundation for later or more advanced skills. These skills also help foster important social, vocational, and educational outcomes.
  • Another critical role of communication support services for these clients is providing them with a means to understand what others are saying. A client who is "acting out" during transitions may be doing so because he or she is confused about what is happening and does not understand the spoken instructions. A visual schedule can reduce challenging behaviors by helping the client to understand and predict the next activity on the schedule.
  • A client who does not talk needs help building a functional system for communicating with others and understanding what is said to him or her.
  • In many cases, an AAC system can help with these needs.

Bottom line: Communication is broader than speech, and communication goals are just as important as speech-related ones.

Q: When should a caregiver start reading to a child? Why should we target reading for a child with severe disabilities? 

A child is NEVER too young to begin learning about print, whether or not he or she has a disability. Shared book-reading has a wide range of benefits for all children, and has a strong evidence base to support it as an effective intervention tool.

  • Book reading exposes all children to emergent literacy and fosters vocabulary growth, development of narrative skills, engagement in social participation, and entry into later true literacy skills (e.g., Bus, van IzjenDoorn, & Pellegrini, 1995; see Ninio, 1983; Snow & Goldfield, 1983).
  • Shared book-reading also has been proven an effective language intervention for children with severe disabilities for goals including enhanced participation in interactions, vocabulary growth, and general linguistic development (e.g., Bellon, Ogletree, & Harn, 2000; Bradshaw, Hoffman, & Norris, 1998; Crowe, Norris, & Hoffman, 2000).
  • Although daily reading is essential to the acquisition of wide experience with print, other activities also are fun and important, including playing word games, arranging magnetic letters, and identifying letters and words in different environments.
  • For children with disabilities, reading development is sometimes neglected in favor of other types of language skills. However, the benefits of reading and literacy are as important for these children as they are for others, especially as reading may support the many other aspects of communication development.

Bottom line: Exposure to print and literacy is critical to development and should occur as early as possible for all children, including children with disabilities.

Funding Issues 

Q: If a child needs communication services, including AAC, who pays for it? 

Eligibility for services depends on many factors, including:

  • The client's age, medical insurance, and enrollment in programs such as early intervention, special education, or vocational rehabilitation.
  • Whether or not the need for services is documented by an authorized individual (physician, case worker).

Bottom line: Payment for communication services involves individualized decisions and involvement of different professionals (See "The Bottom Line" in The ASHA Leader, Oct. 11, 2011).

Q: Are communication services, including AAC, covered by adult services programs? 

There is no blanket entitlement to services or devices that enhance communication.

  • In some cases, services may be funded through state-administered programs, Medicaid, Medicare, or private insurance.
  • Every state has agencies responsible for providing services to individuals with disabilities.
  • The U.S. Department of Health and Human Services has links to these programs, and programs run by independent organizations, such as Kiwanis, can help.

Bottom line: Creativity is key to accessing assistance through a variety of possible sources.

Q: How can communication services be documented as educationally necessary?

Services can be both medically and educationally necessary, and the approach to payment for services depends on the payer being approached.

  • If the school is the targeted funding source, justify need in terms of educational necessity, such as the student's ability to access, participate in, and demonstrate progress with respect to the general education curriculum [documented in an individualized education program (IEP) or 504 plan]. Communication and assistive technology are among the "special factors" that must be considered by all IEP teams.
  • Public and private health insurers look for justification of need in terms of medical necessity (i.e., the communication limitation arises from a diagnosed condition). Communication services may restore lost function, forestall further functional decline, or provide an alternative means of performing the function.

Bottom line: Tailor the request to the domain of the funding source and confine your justification to one or the other.

The techniques and technology to support effective communication intervention in people with severe disabilities have advanced significantly over the last several decades, with an accompanying evidence base. However, clinicians may encounter barriers to optimal service provision, given the practical challenges of serving learners with pervasive support needs and the persistence of incorrect assumptions about their learning capabilities. The NJC information may prove valuable to clinicians, parents, educators, and others providing interventions to individuals of all ages with severe intellectual and developmental disabilities.

This article was written on behalf of, and in conjunction with, the members of the National Joint Committee for the Communication Needs of Persons With Severe Disabilities.

Krista Wilkinson, PhD, professor in the Department of Communication Sciences and Disorders at Penn State University, studies early communication and language in learners with intellectual and developmental disabilities (IDD). Her interests include vocabulary learning in children with and without IDD, and the design and use of augmentative and alternative communication systems in communication and education. Contact her at kmw22psu@gmail.com.

cite as: Wilkinson, K. (2011, November 22). Answers to Your Biggest Questions About Services for People With Severe Disabilities. The ASHA Leader.

Communication Tools for Helping People With Severe Disabilities

People who have limited communication skills may experience restrictions in access to academic, social, and vocational opportunities as well as in participation in self-advocacy and decision-making related to education, health care, and life transitions.

Secondary issues often arise when such individuals experience frustration in communication, commonly expressed in the form of challenging behaviors (Petty, Allen, & Oliver, 2009). These behaviors further compromise all aspects of development when they involve aggression toward others, have significant health implications when they are self-injurious, and increase service costs when extensive behavior management plans are needed.

Effectively designed communication interventions, including augmentative and alternative communication (AAC), can promote optimal functioning by enabling service provision in less restrictive settings, fostering participation in all levels of society, and reducing challenging behavior associated with frustration (Durand, 1993; Worsdell, Iwata, Hanley, Thompson, & Kahng, 2000).

Several intervention approaches have proven to be successful at establishing both spoken and AAC-based communication goals, from direct instructional methods to naturalistic and/or modeling-based approaches (e.g., Fallon, Light, McNaughton, Drager, & Hammer, 2004; Harris & Reichle, 2004; Johnston, Reichle, & Evans, 2004). Research has demonstrated that intervention effectiveness is not diminished when the learner has severe intellectual disability; in fact, during intervention individuals with severe disabilities may progress in their communication skills at a rate equal to or faster than that of people with moderate or mild intellectual limitations (Cole, Coggins, & Vanderstoep, 1999; Snell et al., 2010).

One group dedicated to optimizing services for people with severe disabilities is the National Joint Committee for the Communication Needs of Persons With Severe Disabilities (NJC). This interdisciplinary group of scholars and professionals represents speech-language pathology, special education, assistive technology, augmentative and alternative communication, occupational therapy, physical therapy, psychology, and intellectual disability.

NJC has published a number of resources for services with this population. Perhaps the most popular is the downloadable "Communication Bill of Rights," which states the NJC position that individuals with severe disabilities have the same rights to self-expression and self-advocacy as any other individual. Others include a position statement on access to communication services and supports, a set of practice guidelines, a review of the quality of the research base over the last 20 years, a recently hosted conference on intervention research, and a "Communication Supports Checklist" for clinical use.



Full References

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.

Bellon, M., Ogletree, B., & Harn, W. (2000). The application of scaffolding within repeated storybook reading as a language intervention for children with autism. Focus on Autism and Other Developmental Disabilities, 15, 5258.

Bus, A., van IzjenDoorn, M., & Pellegrini, A. (1995). Joint book reading makes for success in learning to read: A metanalysis on the inter-generational transmission of literacy. Review of Educational Research, 65, 121.

Bradshaw, M., Hoffman, P., & Norris, J. (1998). Efficacy of expansions and cloze procedures in the development of interpretations by preschool children exhibiting delayed language development. Language Speech and Hearing Services in the Schools, 29, 8595. 

Cole, K., Coggins, T., & Vanderstoep, C. (1999). The influence of language/cognitive profile on discourse intervention outcome. Language, Speech, and Hearing Services in Schools, 30, 61–67.

Crowe, L. K., Norris, J. A., & Hoffman, P. R. (2000). Facilitating storybook interactions between mothers and their preschoolers with language impairments. Communication Disorders Quarterly, 21, 131–146.

Durand, M. (1993). Functional communication training using assistive devices: Effects on challenging behavior and affect. Augmentative and Alternative Communication, 9, 168–176.

Fallon, K. A., Light, J., McNaughton., D., Drager, K., & Hammer, C. (2004). The effects of direct instruction on the single-word reading skills of children who require augmentative and alternative communication. Journal of Speech, Language, and Hearing Research, 47, 1424–1239.

Harris, M. D., & Reichle, J. (2004). The impact of aided language stimulation on symbol comprehension and production in children with moderate cognitive disabilities. American Journal of Speech Language Pathology, 13, 155–167.

Johnston, S. S., Reichle, J., & Evans, J. (2004). Supporting augmentative and alternative communication use by beginning communicators with severe disabilities. American Journal of Speech Language Pathology, 13, 20–30.

Ninio, A. (1983). Joint book reading as a multiple vocabulary learning device. Developmental Psychology, 19, 445451.

Petty, J., Allen, D., & Oliver, C. (2009). Relationship among challenging, repetitive, and commununicative behaviors in children with severe intellectual disabilities. American Journal on Intellectual and Developmental Disabilities, 114, 356–368.

Snell, M. E., Brady, N. C., McLean, L., Ogletree, B. T., Siegel, E., Sylvester, L., … Sevcik, R. (2010). Twenty years of communication intervention research with individuals who have severe intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities,115, 364–381.

Snow, C. E., & Goldfield, B. (1983). Turn the page please: Situation-specific language learning. Journal of Child Language, 10, 551570.

Wilkinson, K. M. (2006). A brief history of mental retardation and developmental disabilities: Where have we been, and where are we now? Perspectives on Language Learning and Education, 13, 2–6.

Worsdell, A. S., Iwata, B., Hanley, G. P., Thompson, R. H., & Kahng, S. (2000). Effects of continuous and intermittent reinforcement for problem behavior during functional communication training. Journal of Applied Behavior Analysis, 33, 167–179.



  

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