The European IASSID conference is on in Rome this year. I'm not going, unfortunatley, but PIMD is featuring amazingly on the program. Here are the 15 symposia organised so far (gives you a bit of an idea of what's happening research wise around the world for this group of people):
Symposium 1: Staff attitudes in working with persons with PIMD
Moderator: Barbara Fornefeld
1. Erik Weber (Koblenz-Landau): The importance of staff attitudes in processes of deinstitutionalization - an example of field research in the area of PIMD
2. Ursula Böing (Cologne): The ‘research workshop’ – improving the professionalism of teachers educating students with PIMD through a reflective process
3. Krystie DeZonia (Californië): Influences on paraprofessional decision-making when working with adults with profound and multiple disabilities
Symposium 2: New approaches in assessment for persons with PIMD
Moderator: Jean Jacques Detraux
1. Pia Bienstein (Cologne): Functional assessment procedures to assess self injurious behavior in people with intellectual disabilities: a postal survey in German psychiatric clinics and facilities
2. Vera Munde (Groningen): Alertness observations in individuals with profound intellectual and multiple disabilities
3. Pieter Vos, Paul de Cock, Katja Petry, Wim van den Noortgate, Bea Maes (Leuven): Do you know what I feel? A first step towards a physiological measure of the subjective well-being of persons with profound intellectual and multiple disabilities.
Symposium 3: Advanced diagnostics in children with severe neurological impairment and ID: instrument development and feasibility
Moderator: Corine Penning
1. Sonja Mensch (Rotterdam): Development and reliability of MOKAVIC, a new instrument for evaluation of small motor changes in children with severe neurological impairment and ID
2. Sandra Mergler (Rotterdam): Dual energy x-ray Absorptiometry (DEXA) in children with severe neurological impairment and ID: artefacts and disrupting factors
3. Corine Penning (Rotterdam): A new questionnaire for the evaluation and follow-up of health-related quality of life of children with severe neurological impairment and ID
Symposium 4: Nutrition and bone health in children with neurological impairment and ID
Moderator: Corine Penning
1. Sandra Mergler (Rotterdam): Prevalence and risk factors of low bone mineral density in children with severe neurological impairment and ID
2. Corine Penning (Rotterdam): Nutritional assessment in children with severe neurological impairment and ID: current state of the art and research needs
3. Corine Penning / Sandra Mergler (Rotterdam): Fine-tuning of commonly used nutritional assessment methods using stable isotopes: development of group-specific equations for children with severe neurological impairment and ID
Symposium 5: Health issues in persons with PIMD (1)
Moderator: Annette Van der Putten
1. Sui Sone (Japan): A study about cancer in adults with profound intellectual and multiple disabilities
2. Matsubasa (Japan): A study of staff work on patients with intensive medical care in an institutional setting for persons with severe motor and intellectual disabilities
3. Jenny Miller & Jenny Whinnett (Dundee): Developing practice placements for allied health professionals in family home settings: experiencing a day in the life of families caring for individuals with PIMD
Symposium 6: Health issues in persons with PIMD (2)
Moderator: Loretto Lambe
1. Jin-ying Chen & Nan-chieh Chen (Taiwan), Communication between persons with PIMD and caregivers in hygienic care-problems encountered and strategies applied
2. Jenny Whinnett & Loretto Lambe (Dundee): Postural care and protection of body shape for people with PIMD: training for family and paid carers
3. Michael Brown, Loretto Lambe & Brenda Garrard Young (Dundee): Invasive procedures: breaking barriers and achieving control for people with profound intellectual disabilities
Symposium 7: Motor activation in persons with profound intellectual and multiple disabilities
Moderator: Carla Vlaskamp
1. Annette van der Putten & Carla Vlaskamp (Groningen): Physical activity in persons with profound intellectual and multiple disabilities; research into the type and amount of physically focussed activities in daily practice
2. Carla Vlaskamp & Annette Van der Putten (Groningen): Physical activities in persons with profound intellectual and multiple disabilities; when and how they are offered
3. A. Waninge, R. Van Wijck, B. Steenbergen, C.P. van der Schans (The Netherlands): Measuring physical fitness in persons with profound intellectual and multiple disabilities
Symposium 8: Behaviour problems in persons with PIMD
Moderator: Carla Vlaskamp
1. Petra Poppes, Annette van der Putten & Carla Vlaskamp (Groningen): Frequency and severity of challenging behaviour in persons with profound intellectual and multiple disabilities (PIMD)
2. Greet Lambrechts & Bea Maes (Leuven): Staff’s emotions, attributions, and reactions towards challenging behaviour : an interview study
3. Jill Bradshaw (UK): Staff attributions of challenging behaviour and perceptions of communication
Symposium 9: Multi-sensory-storytelling: a cross-European implementation (1)
Moderator: Barbara Fornefeld
1. Nicola Grove & Jane Harwood (London): Narrative with non speakers: how does it work?
2. Anke Gross (Germany): Stories of Empowerment – Qualitative Guided Interviews with Members of an Inclusive Literacy Program
3. Hannah Young, Loretto Lambe & Maggi Fenwick (Dundee): Using multi-sensory storytelling techniques with people with profound intellectual and multiple disabilities to encourage learning of sensitive issues
Symposium 10: Multi-sensory-storytelling: a cross-European implementation (2)
Moderator: Loretto Lambe
1. Annet ten Brug, Annette van der Putten & Carla Vlaskamp (Groningen): Quality and effectiveness in multi-sensory storytelling
2. Anneleen Penne & Bea Maes (Leuven): Staff behaviour in interaction with persons with PIMD during multi-sensory-storytelling sessions
3. Barbara Fornefeld: mehr¬Sinn Geschichten® (Cologne): A Way of Cultural Participation for Persons with PIMD
Symposium 11: Communication and interaction with persons with PIMD (1)
Moderator: Juliet Goldbart
1. Colin Griffiths (Dublin): Attuning: a theory of interaction of people with severe and profound intellectual and multiple disabilities and their carers
2. Ine Hostyn, Marlene Daelman, Marleen Janssen, Bea Maes (Leuven): Meaning making in dialogue between persons with PIMD and direct support staff
3. Jenny Wilder (Sweden): Interaction: proximal processes of children with profound multiple disabilities
Symposium 12: Communication and interaction with persons with PIMD: the perspective of families (2)
Moderator: Bea Maes
1. Jenny Wilder (Sweden): Children with PIMD: family accommodation, social networks and interaction
2. Juliet Goldbart & Sue Caton (Manchester): A person first: parent’s views on carers’ communication with their sons and daughters with profound disabilities
3. Suzanne Jansen, Annette van der Putten & Carla Vlaskamp (Groningen): What do parents find important in the care for their child with profound intellectual and multiple disabilities
Symposium 13: Interventions
Moderator: Krystie DeZonia
1. Hefziba Lifshitz (Israel): Effect of the MISC intervention on cognitive, affective and behavioral functioning of adults with severe intellectual disability
2. Dr. Maria José Cid (Barcelona): The effect of Snoezelen sessions on the quality of life in adults with profound intellectual disabilities
3. Vera Munde (Groningen): Alertness and Snoezelen in individuals with profound intellectual and multiple disabilities
Symposium 14: The application of technology in facilitating positive change in the lives of individuals with PIMD
Moderator: Annette Van der Putten
1 Guilio Lancioni, Assistive technology in people with PIMD
2 Saskia Damen, Usability and effectiveness of a technological interaction device in adults with PIMD
3 Dick Lunenborg, Coordinating socio-educational progress of children with PIMD in the school and home setting
Symposium 15: Thinking and people with PIMD
Moderator: Jean Ware
1. Rachel Hughes, The attribution of thinking to people with PIMD by their carers, relatives and friends
2. Phil Martin, Developing thinking skills in a school for learners with SLD / PMLD in Wales
3. Jean Ware, Thinking about thinking: precursors and devlopment of cognition in learners with PIMD
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.
Followers
HOP
The HOP is a simple approach and attitude to spending time with people with PIMD. Click on the front cover to download your own copy.
What do you think the issues are?
About Me
- Sheridan
- I am a person interested in the lives of people with PIMD. I wear multiple hats including researcher, therapist, advocate, and friend. I strongly believe that in order to continue to improve the lives of adults with PIMD we need to acknowledge the specfic issues related to this group of people. The first step in this is acknowledging that there are a group of people who have PIMD, and although they are all individuals there are some issues that they share in common. I hope this weblog enables discussion of what some of these issues are.
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.
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