PIMDA: Profound Intellectual & Multiple Disability Australia: July 2010

Friday, July 30, 2010

Organisations that might be relevant to supporters of people with PIMD

Some of these organisations I know a fair bit about, some not at all. They are professional organisations that might be of relevance to people with PIMD. Some have conferences, newsletters, websites. Just thought I'd share some I know of.
Sheri
PANDDA - The Professional Association of Nurses in Developmental Disability Areas
AGOSCI - Formerly Australian Group on Severe Communication Impairment
ASSID - Australasian Society for the Study of Intellectual Disability
Spot On DD - Speech Pathologists, Physiotherapists, and Occupational Therapists who work in the area of Developmental Disability
ARATA - Australian Rehabilitation & Assistive Technology Association
Please share others you know of...

Wednesday, July 28, 2010

Raising Our Sights - video

After several months of waiting, the UK Raising Our Sights video that accompanies the report is now on the Department of Health website. It has been segmented into parts, for download size purposes I assume. I recommend watching all parts - but if you have to choose, I would recommend starting with Victoria and Mitchell's video (Alex and Simon perhaps are more in-line with having severe ID rather than profound - but nevertheless it is a good video).
I think this an important example of supporting adults with PIMD and it may be helpful to both services and families supporting people with PIMD.
Click here for both the report and the videos.

Wednesday, July 14, 2010

Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities?

I've just published a new article on the problems with age-appropriateness concept. Hope it gets people talking about the pros and cons, rather than just accepting that because policy says it has to be it has to be.
Forster, S. (2010). Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities? Journal of Intellectual and Developmental Disability, 35, 129-131. doi: 10.3109/13668251003694606

Friday, July 9, 2010

Changing Places in Australia!!

The Changing Places campaign in the UK has made leaps in ensuring that there are REALLY accessible bathrooms available for people with PIMD and their supporters. Now Changing Places is infiltrating Australia.
I asked Kathryn Allen to prepare a blurb for me about a bathroom she's been involved in that is up with Changing Places standards. Exciting news indeed!

People with severe disabilities will be able to enjoy the health benefits of a trip to the public pool thanks to facilities at Brisbane City Council’s new Colmslie Pool which opened on 1 July 2010. The new change room with a shower and toilet in the indoor pool hall is designed to the “Changing Places” standards for people with severe disabilities.

The room provides a height adjustable adult-sized changing bench/shower trolley and a tracking hoist system, with adequate space in the changing area for the disabled person and up to two carers. The track also goes from within the change room to the indoor pool so people only need to be moved into the sling once to access the pool. The indoor pool is heated to 32 degrees Celsius, is 1.2m deep and has ramp access in addition to the track and hoist.

For more info on Changing Places click here. Be sure to check out the real-life stories!
To contact Kathryn, email kathryn.allen@brisbane.qld.gov.au

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.

PIMDA: Profound Intellectual & Multiple Disability Australia