A voice for research and a voice for life. Providing participant communication supports. Commentary on “Social researchers and participants with intellectual disabilities and complex communication (access) needs. Whose capacity? Whose competence?” (Dee-Price, 2020)

References

• American Speech-Language-Hearing Association (2005). Roles and responsibilities of speech-language pathologists with respect to alternative communication: Position statement. pp. 1–18. https://www.asha.org/policy/PI2010-00317/
   Google Scholar
• Anderson, K. L. (2016). Communication: First principles. www.cadr.org/research-to-action-guides
   Google Scholar
• Antaki, C. , Crompton, R. J. , Walton, C. , & Finlay, W. M. L. (2017). How adults with a profound intellectual disability engage others in interaction. Sociology of Health & Illness , 39 (4), 581–598. https://doi.org/10.1111/1467-9566.12500
   PubMed Web of Science ®Google Scholar
• Balandin, S. (2002). Message from the president. The ISAAC Bulletin , 67 , 2.
   Google Scholar
• Beukelman, D. , & Mirenda, P. (2005). Augmentative and alternative communication: Supporting children and adults with complex communication needs (3rd ed.). Paul H. Brooks.
   Google Scholar
• Bradshaw, J. (2001). Complexity of staff communication and reported level of understanding skills in adults with intellectual disability. Journal of Intellectual Disability Research: JIDR , 45 (Pt 3), 233–243. https://doi.org/10.1046/j.1365-2788.2001.00318.x
   PubMed Web of Science ®Google Scholar
• Cambridge, P. , & Forrester-Jones, R. (2003). Using individualised communication for interviewing people with intellectual disability: A case study of user-centred research. Journal of Intellectual & Developmental Disability , 28 (1), 5–23. https://doi.org/10.1080/136682503100008687
   Web of Science ®Google Scholar
• Dalton, C. , & Sweeney, J. (2013). Communication supports in residential services for people with an intellectual disability. British Journal of Learning Disabilities , 41 (1), 22–30. https://doi.org/10.1111/j.1468-3156.2011.00717.x
   Web of Science ®Google Scholar
• Dee-Price, B.-J. M. (2020). Social researchers and participants with intellectual disabilities and complex communication (access) needs. Whose capacity? Whose competence? Research and Practice in Intellectual and Developmental Disabilities , 7(2), 132–143. https://doi.org/10.1080/23297018.2020.1788418
   Google Scholar
• De Geus-Neelen, K. C. J. M. , Van Oorsouw, W. M. W. J. , Hendriks, L. A. H. C. , & Embregts, P. J. C. M. (2019). Perceptions of staff and family of the quality of life of people with severe to profound intellectual disability. Journal of Intellectual & Developmental Disability , 44 (1), 42–50. https://doi.org/10.3109/13668250.2017.1310813
   Web of Science ®Google Scholar
• Dennis, R. (2002). Nonverbal narratives: Listening to people with severe intellectual disability. Research and Practice for Persons with Severe Disabilities , 27 (4), 239–249. https://doi.org/10.2511/rpsd.27.4.239
   Web of Science ®Google Scholar
• DeSimone, E. A. , & Cascella, P. W. (2005). Communication quality indicators: A survey of Connecticut group home managers. Journal of Developmental and Physical Disabilities , 17 (1), 1–17. https://doi.org/10.1007/s10882-005-2197-6
   Web of Science ®Google Scholar
• Dunn, L. M. , & Dunn, D. M. (2007). Peabody picture vocabulary test (4th ed.). Pearson.
   Google Scholar
• Forster, S. (2020). Approaching a person with profound intellectual and multiple disabilities. In M. Mind & I. Strnadova (Eds.), Belonging for people with intellectual and multiple disabilities. Routledge.
   Google Scholar
• Glegg, S. N. (2019). Facilitating interviews in qualitative research with visual tools: A typology. Qualitative Health Research , 29 (2), 301–310. https://doi.org/10.1177/1049732318786485
   PubMed Web of Science ®Google Scholar
• Goode, D. (1994). A world without words: Social construction of children born deaf and blind . Temple University Press.
   Google Scholar
• Grove, N. (2015). Using storytelling to support children and adults with special needs: Transforming lives through telling tales . Routledge.
   Google Scholar
• Grove, N. , Bunning, K. , Porter, J. , & Olsson, C. (1999). See what I mean: Interpreting the meaning of communication by people with severe and profound intellectual disabilities. Journal of Applied Research in Intellectual Disabilities , 12 (3), 190–203. https://doi.org/10.1111/j.1468-3148.1999.tb00076.x
   Web of Science ®Google Scholar
• Iacono, T. (2014). What it means to have complex communication needs. Research and Practice in Intellectual and Developmental Disabilities , 1 (1), 82–85. https://doi.org/10.1080/23297018.2014.908814
   Google Scholar
• Iacono, T. (2019). An exploration of multimodality in augmentative communication. Journal of Clinical Speech and Language Pathology , 21 (3), 126–130.
   Google Scholar
• Iacono, T. , West, D. , Bloomberg, K. , & Johnson, H. (2009). Reliability and validity of the revised triple C: Checklist of communicative competencies for adults with severe and multiple disabilities. Journal of Intellectual Disability Research: JIDR , 53 (1), 44–53. https://doi.org/10.1111/j.1365-2788.2008.01121.x
   PubMed Web of Science ®Google Scholar
• Johnson, H. , Bigby, C. , Iacono, T. , Douglas, J. , Katthagen, S. , & Bould, E. (2017). Increasing day service staff capacity to facilitate positive relationships with people with severe intellectual disability: Evaluation of a new intervention using multiple baseline design. Journal of Intellectual & Developmental Disability , 42 (4), 391–402. https://doi.org/10.3109/13668250.2016.1246656
   Web of Science ®Google Scholar
• Kamstra, A. , van der Putten, A. A. J. , Post, W. J. , & Vlaskamp, C. (2015). Informal social networks of people with profound intellectual and multiple disabilities: Relationship with age, communicative abilities and current living arrangements. Journal of Applied Research in Intellectual Disabilities: JARID , 28 (2), 159–164. https://doi.org/10.1111/jar.12115
   PubMed Web of Science ®Google Scholar
• Law, J. , van der Gaag, A. , Hardcastle, B. , Beck, J. , MacGregor, A. , & Plunkett, C. (2007). Communication support needs: A review of the literature. pp. 1–81. http://www.gov.scot/Publications/2007/06/12121646/0
   Google Scholar
• Moorcroft, A. , Scarinci, N. , & Meyer, C. (2019). “I’ve had a love-hate, I mean mostly hate relationship with these PODD books”: Parent perceptions of how they and their child contributed to AAC rejection and abandonment. Disability and Rehabilitation: Assistive Technology . Advance online publication. https://doi.org/10.1080/17483107.2019.1632944
   Google Scholar
• Noël, G. (2015). Designing a visual tool to interview people with communication disabilities: A user-centered approach. Visible Language , 49 (1/2), 63–79.
   Google Scholar
• Oliver, M. (1990). The politics of disablement . Macmillan.
   Google Scholar
• Petry, K. , & Maes, B. (2006). Identifying expressions of pleasure and displeasure by persons with profound and multiple disabilities. Journal of Intellectual & Developmental Disability , 31 (1), 28–38. https://doi.org/10.1080/13668250500488678
   PubMed Web of Science ®Google Scholar
• Petry, K. , Maes, B. , & Vlaskamp, C. (2005). Domains of quality of life of people with profound multiple disabilities: The perspective of parents and direct support staff. Journal of Applied Research in Intellectual Disabilities , 18 (1), 35–46. https://doi.org/10.1111/j.1468-3148.2004.00209.x
   Web of Science ®Google Scholar
• Siegelman, C. K. , Budd, E. C. , Spanhel, C. L. , & Schoenrock, C. J. (1981). When in doubt say yes: Acquiescence in interviews with mentally retarded persons. Mental Retardation , 19 , 53–58.
   PubMedGoogle Scholar
• Solarsh, B. , & Johnson, H. (2017). Talking about communication access and social inclusion. Journal of Clinical Practice in Speech-Language Pathology , 19 (3), 118–124.
   Google Scholar
• Speech Pathology Australia (2012). Augmentative and alternative dommunication: Clinical guideline. Melbourne. http://www.speechpathologyaustralia.org.au/library/Clinical_Guidelines/24072012%20FINAL%20Augmentative%20and%20Alternative%20Communication%20Cl.pdf
   Google Scholar
• Stancliffe, R. , Tichá, R. , Larson, S. , Hewitt, A. , & Nord, D. (2015). Responsiveness to self-report interview questions by adults with intellectual and developmental disability. Intellectual and Developmental Disabilities , 53 (3), 163–254. https://doi.org/10.1352/1934-9556-53.3.163
   PubMed Web of Science ®Google Scholar
• Teachman, G. , & Gibson, B. E. (2018). Integrating visual methods with dialogical interviews in research with youth who use augmentative and alternative communication. International Journal of Qualitative Methods , 17 (1), 160940691775094. https://doi.org/10.1177/1609406917750945
   Web of Science ®Google Scholar
• Van der Gaag, A. (2005). Communication assessment profiles. Speech Profiles. http://www.speechprofiles.co.uk/whatis.html
   Google Scholar