Author Archives: sheridanforster

PIMD in Australia in PMLD LINK UK


PMLD LINK is a magazine in the UK which provides “news and information for everyone working with people with profound and multiple learning disabilities”. I submitted a paper to their most recent edition focusing on International Perspectives.
It gives a brief overview of the situation in Australia (as I see it) and then introduces some of the people working in Australia to improve the lives of people with PIMD.
I can’t work out a way to link the doc/pdf to the blog at the moment, but if you’d like to see the paper that just give me a hoy!

All go in Rome

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

Feedback from Master Class

Last Friday I went to the Master Class at Latrobe Uni by Jim Mansell about his recent report “Raising our sights: Services for adults with profound intellectual and multiple disabilities”.
There was probably about 50 people there, with lots of people from Yooralla and a handful of therapist colleagues.
Jim did an overview of the report, then showed a DVD that goes with it (I’m trying to get hold of this), and then we did small group discussion on themed areas and their relationship to Victoria.
It was great to hear someone being specific and using the term profound intellectual and multiple disability, which I think does much to ensure a shared understand of the group and launch off lobbying. Jim was also very good at explaining the context of the report – it is written for policy makers, in language that hopefully they can understand and act upon – it is not a practice guide.
If you want to have a look at the report you can download it from http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114347.pdf. The video is supposed to be linked in the future – it will be an excellent resource showing some good big scale practice (e.g., use of personal funding for shared accommodation) and small scale practice (e.g., some really nice interactions with the people with PIMD)
sheri