NJC Video: Principles and Practices for Working With Individuals With Severe Disabilities

The National Joint Committee for the Communication Needs of Persons With Severe Disabilities (NJC) advocates for individuals with significant communication support needs resulting from intellectual disability, that may coexist with autism, sensory and/or motor limitation. The NJC is made up of representatives from eight member organizations, and focuses on research, policy, practice, and education.

This video was developed specifically to encourage students and practitioners to think about the particular challenges faced by individuals with severe disabilities across the lifespan. The NJC members would like to thank the Catherine Brewer Smith Professorship at Western Carolina University for its generous support of this project.

Below you will find questions and resources that each member has provided to facilitate conversation and extend study on each topic. Use the video in its entirety, or choose selected topics for study and discussion. Time stamps are provided after the title of each section for your convenience.

The Communication Bill of Rights (CBOR) (2:20)   

Diane Paul, ASHA Staff/Ex Officio

• What is the CBOR?
• How can the CBOR be used to create a shared belief and values system?
• How could I use the CBOR to promote access to communication?

Seminal Reference:

Brady, N. C., Bruce, S., Goldman, A., Erickson, K., Mineo, B., Ogletree, B. T., Paul, D., Romski, M., Sevcik, R., Siegel, E. Schoonover, J., Snell, M., Sylvester, L., & Wilkinson, K. (2016). Communication services and supports for individuals with severe disabilities: Guidance for assessment and intervention. American Journal on Intellectual and Developmental Disabilities, 121(2), 121–138.

Opportunities for Authentic Choice Making (3:43) 

Susan Bruce, DCDD (CEC) Representative

• Why is authentic choice making important?
• How can you provide choices in an authentic way?
• What are some considerations in creating authentic communication opportunities through choice making?
• How do you make sure that there are opportunities for choice making?
• Are there specific elements in the CBOR that relate to this segment?

Seminal References:

Bruce, S. & Ivy, S. (2017). Severe and multiple disabilities. In J. M. Kauffman & D. P. Hallahan (Eds.), Handbook of special education, Second Edition. (pp. 411–427). New York: Routledge.

Shevin, M. & Klein, N. K. (2004). The importance of choice-making for students with severe disabilities. Research & Practice for Persons with Severe Disabilities, 29, 161–168. 

Wood, W. M., Fowler, C. H., Uphold, N., & Test, D. W. (2005). A review of self-determination interventions with individuals with severe disabilities. Research & Practice for Persons with Severe Disabilities, 30, 121–146.

Transition to Adult Services (7:04) 

Amy Goldman, USAAC Representative

• What are the differences between school and adult services systems?
• What are the challenges to future planning?
• How will these points impact your practice?
• Are there specific elements of the CBOR that relate to transitions among systems?

Seminal References:

Hamm, B., & Mirenda, P. (2006). Post-school quality of life for individuals with developmental disabilities who use AAC. Augmentative and Alternative Communication, 22, 134–147.

Kennedy, P. (2010). Navigating through transition with individuals with speech disabilities. Perspectives on Augmentative and Alternative Communication, 19, 44–50.

McNaughton, D.B., & Beukelman, D.R. (Eds.). (2010). Transition Strategies for Adolescents and Young Adults Who Use AAC. Baltimore: Brookes Publishing Company.

If You See Someone Without An AAC System, Don't Assume That It Has Been Tried And Discarded (11:00)     

Andrea Barton-Hulsey, ASHA Representative

• Can AAC services be introduced in adulthood for the first time?
• What considerations should be made when providing services to adults?
• How do you take into account an adult’s previous experiences—or the lack thereof—when approaching communication interventions?
• Are there specific elements in the CBOR that relate to this segment?

Seminal Reference:

Cheslock, M., Barton-Hulsey, A., Romski, M. A., & Sevcik, R. A. (2008). Using a speech generating device to enhance communicative abilities and interactions for an adult with moderate intellectual disability: A case report. Intellectual and Developmental Disabilities, 46, 376–386. 

Literacy (12:16)  

Karen Erickson, TASH Representative

• Why is literacy important for people of all ages?
• What is your role in supporting literacy development in people with CCN?
• What is the relationship between literacy and AAC?

Seminal References:

Erickson, K. A. (2017). Comprehensive literacy instruction, interprofessional collaborative practice, and students with severe disabilities. American Journal of Speech Language Pathology, 26, 193–205. 

Erickson, K. A., & Koppenhaver, D. A. (2020). Literacy for All: Teaching Students with Significant Disabilities to Read and Write. Baltimore, MD: Brookes.

Koppenhaver, D. (2000). Literacy in AAC: What should be written on the envelope we push? Augmentative and Alternative Communication, 16, 270–279. 

Inter-Professional Collaborative Practice (IPCP) (15:37)    

Mari Therrien, APTA Representative

• What is the importance of IPCP when supporting people with severe disabilities?
• How are you working with others to provide the best outcomes for people with severe disabilities?
• What are the characteristics of effective interprofessional teams?
• Are there specific elements in the CBOR that relate to this segment?

Seminal References:

American Speech-Language-Hearing Association (n.d.). Augmentative and alternative communication (Practice Portal).

American Speech-Language-Hearing Association (n.d.). Early intervention. (Practice Portal). 

American Speech-Language-Hearing Association (n.d.). Interprofessional education/Interprofessional practice (IPE/IPP). 

Emergent Communication (17:57)  

Beth Mineo, ATAP

• Why is it important to recognize a variety of forms of unintentional communication and emergent intentional communication?
• How can the Communication Matrix be a useful tool in assessing and characterizing communication?
• Are there specific elements in the CBOR that relate to this segment?

Seminal Reference:

Rowland, C. (2011). Using the communication matrix to assess expressive skills in early communicators. Communication Disorders Quarterly, 32, 190-201. 

Communication Matrix website

Myths (21:47)                                                                                           

MaryAnn Romski, AAIDD Representative & Rose A. Sevcik, USSAAC Representative

• When do you provide AAC services?
• What is the value of providing SGDs to individuals with severe disabilities across the lifespan?
• What is the role of AAC in the development of speech?
• Are there specific elements in the CBOR that relate to this segment?

Seminal References:

Romski, M.A., Sevcik, R.A., Adamson, L.B., Cheslock, M.A., Smith, A., Barker, R.M., & Bakeman, R. (2010). Randomized comparison augmented and non-augmented language intervention for toddlers with developmental delays and their parents. Journal of Speech, Language, and Hearing Research, 53, 350–364. 

Romski, M.A., & Sevcik, R.A. (2005). Augmentative communication and early intervention: Myths and realities. Infants and Young Children, 18, 174–185. 

Sevcik, R. A. & Romski, M. A. (Eds.) (2016). Communication Interventions for Individuals with Severe Disabilities: Exploring Research Challenges and Opportunities. Baltimore, MD:  Paul H. Brookes.