PIMDA: Profound Intellectual & Multiple Disability Australia

Welcome to PIMDA. PIMDA stands for profound intellectual and multiple disabilities Australia. PIMDA is Sheridan Forster's weblog about issues to do with people with profound intellectual and multiple disabilities (PIMD) in Australia. The purpose of PIMDA is to increase awareness of people with PIMD and the issues pertaining to this population. The other purpose of PIMDA is to build a network of interested people who can then work together to improve the lives of people with PIMD.

Wednesday, June 18, 2008

Why PIMD?

Some of you may be thinking isn't it wrong to label people? I believe that in order to improve the lives of people with the most severe disabilities it is important to develop an identity. An identity acknowledges that everybody is different (i.e. heterogenous) yet there are groups that share similar characteristics and issue areas. Identity development has played a role in fighting against discrimination for many groups of people, such as woman, gay people, and aboriginals (see Ian Parsons' Cripples, Coons, Fags and Fems for further discussion of identity).
I have chosen to use the identity term "profound intellectual and multiple disabilities" or PIMD. I believe that it is most accurate in clearly describing this group of people: people who have profound intellectual disability alongside other disabilities such as physical, sensory, and health issues. PIMD is also the term used by IASSID and has international saliancy. In the UK the term PMLD (profound and multiple learning disabilities) is used in line with their use of "learning disabilities" instead of "intellectual". Terms such as high support needs or complex needs, cover a broader group and are easily confused. Similarly just using the term severe disability does not capture the specific degree of cognitive impairment experienced by people with PIMD.
Acknowledging that someone has a PIMD is not a values statement; it is a statement that recognises that the person experiences the world in a different way from most people and requires the people around them to adapt the way that they are so that they can share meaning with that person.

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Advocacy articles

Longley, S., & Collins, G. J. (1994). The development of a non-verbal satisfaction measure for use with people who have severe or profound learning disabilities. British Journal of Developmental Disabilities, XL(79), 143-149.
Porter, J., Ouvry, C., Morgan, M., & Downs, C. (2001). Interpreting the communication of people with profound and multiple learning difficulties. British Journal of Learning Disability, 29(1), 12-16.
Ware, J. (2004). Ascertaining the views of people with profound and multiple learning disabilities. British Journal Learning Disability, 32(4), 175-179.

Arts and multi-sensory articles

Ashby, M., Lindsay, W. R., Pitcaithly, D., Broxholme, S., & Geelen, N. (1995). Snoezelen: Its effects on concentration and responsiveness in people with profound multiple handicaps. British Journal of Occupational Therapy, 58(7), 303-307.
Brodin, J. (2005). Diversity of aspects on play in children with profound multiple disabilities. Early Child Development and Care, 175, 635-646.
Bunning, K. (1998). To engage or not to engage? Affecting the interactions of learning disabled adults. International Journal of Language and Communication Disorders, 33(Supplement), 386-391.
Cuvo, A. J., May, M. M., & Post, T. M. (2001). Effects of living room, Snoezelen room, and outdoor activities on stereotypic behavior and engagement by adults with profound mental retardation. Research in Developmental Disabilities, 22, 183-204.
Graham, J. (2004). Communicating with the uncommunicative: music therapy with pre-verbal adults. British Journal Learning Disability, 32(1), 24-29.
Hogg, J., Cavet, J., Lambe, L., & Smeddle, M. (2001). The use of 'Snoezelen' as multisensory stimulation with people with intellectual disabilities: a review of the research. Research in Developmental Disabilities, 22, 353-372.
Lindsay, W. R., Pitcaithly, D., Geelen, N., Buntin, L., Broxholme, S., & Ashby, M. (1997). A comparison of the effects of four therapy procedures on concentration and responsiveness in people with profound learning disabilities. Journal of Intellectual Disability Research, 41(3), 201-207.
Logan, K. R., Jacobs, H. A., Gast, D. L., Smith, P. D., Daniel, J., & Rawls, J. (2001). Preferences and reinforcers for students with profound multiple disabilities: can we identify them? Journal of Developmental and Physical Disabilities, 13(2), 97-122.
Matson, J. L., Bamburg, J. W., & Smalls, Y. (2004). An analysis of Snoezelen equipment to reinforce persons with severe or profound mental retardation. Research in Developmental Disabilities, 25(1), 89-95.
Rainey Perry, M. M. (2003). Relating improvisational music therapy with severely and multiply disabled children to communication development. Journal of Music Therapy, XL(3), 227-246.
Shapiro, M., Parush, S., Green, M., & Roth, D. (1997). The efficacy of the "Snoezelen" in the mangagement of children with mental retardation who exhibit maladaptive behaviours. British Journal of Developmental Disabilities, 43(2), 140-155.
Singh, N. N., Lancioni, G. E., Winton, A. S. W., Molina, E. J., Sage, M., Brown, S., et al. (2004). Effects of Snoezelen room, activities of daily living skills training, and vocational skills training on aggression and self-injury by adults with mental retardation and mental illness. Research in Developmental Disabilities, 25(3), 285-293.
Vlaskamp, C., & Nakken, H. (1999). Missing in execution therapies and activities for individuals with profound multiple disabilities. British Journal of Developmental Disabilities, 45(2), 99-109.
Vlaskamp, C., de Geeter, K. I., Huijsmans, L. M., & Smit, I. H. (2003). Passive activities: the effectiveness of multisensory environments on the level of activity of individuals with profound multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 16, 135-143.