Here's an update on a conference coming up next March in Victoria
Communicate, Participate, Enjoy! - Solutions to Inclusion Conference - 2011
Friday, December 17, 2010
More info about Communicate, Participate, Enjoy conference
Here's an update on a conference coming up next March in Victoria
Communicate, Participate, Enjoy! - Solutions to Inclusion Conference - 2011
Friday, October 22, 2010
What are 'meaningful activities'?
This side box was in the Lambeth report. Some of the things I agree with, some I'm not so sure about. I mean, you can't define meaningful by saying it is meaningful to the person - it circuitous, because it still doesn't say what's meaningful. What is genuinely enjoyable - and is enjoyment necessary for meaning, or is just things that provoke us to action or thought (enjoyable, frustrating, or interesting)? Where are the dividing line between what you or I might find meaningful, and what each individual with PIMD might find meaningful (does it always need to have a community parameter?)
What do you think? Have you seen any better definitions of meaningful activities
What are ‘meaningful activities’?
• They are stimulating and meaningful to the individual.
• People’s physical and health needs are supported in a dignified manner.
• The person can access the community by taking part in activities that they find genuinely enjoyable.
• They recognise that many people with PMLD experience the world largely on sensory level and take this into account.
• People are included in community activities in ways that are meaningful to each person.
• Manual handling policy and practice don’t act as a barrier to the person taking part in community activities.
• They recognise the importance of one-to-one interaction, with a workforce who are skilled in meeting complex health needs, and trained in nonformal communication techniques.
• Suitable and flexible transport is provided that enables people to physically move around their community.
What do you think? Have you seen any better definitions of meaningful activities
What are ‘meaningful activities’?
• They are stimulating and meaningful to the individual.
• People’s physical and health needs are supported in a dignified manner.
• The person can access the community by taking part in activities that they find genuinely enjoyable.
• They recognise that many people with PMLD experience the world largely on sensory level and take this into account.
• People are included in community activities in ways that are meaningful to each person.
• Manual handling policy and practice don’t act as a barrier to the person taking part in community activities.
• They recognise the importance of one-to-one interaction, with a workforce who are skilled in meeting complex health needs, and trained in nonformal communication techniques.
• Suitable and flexible transport is provided that enables people to physically move around their community.
New UK report: Lambeth PMLD project
I wish I didn't mention UK all the time - but that's where the info is coming from.
MENCAP have just come out with a new report that might be of interest.
Mencap has recently launched a report exploring the numbers and needs of people with PMLD in Lambeth. The report will not only help Lambeth Council and NHS Lambeth better plan for this part of the population, but the project and recommendations will help other local areas to focus on the needs of people with PMLD and ensure their plans are inclusive of those with the most complex needs.
Find out more and read the report http://www.mencap.org.uk/page.asp?id=19495
Monday, August 30, 2010
What speech pathologists are doing with people with PIMD in the UK
Professor Juliet Goldbart, from Manchester Metropolitan University, presented the following paper at ISAAC in Barcelona. Below is the extended abstract.
I haven't included the references - give me a yell if you want them too.
Introduction
Significant impairments in language and communication are a core feature of profound intellectual disability (PID, Arthur-Kelly, Bochner & Mok, 2007; Lacey & Ouvry, 1998). Many people with PID will have additional sensory or physical disabilities, complex health needs or mental health difficulties. Children and adults with profound intellectual disability can thus be seen as one of the most vulnerable groups in society. Royal College of Speech & Language Therapists’ (RCSLT) Clinical Guidelines state that speech and language therapy should be available to people with profound disability, however, the evidence base for assessment and intervention in this area is small and fragmented.
A recent review identified six intervention approaches for this client group for which evidence was available. These were direct approaches:
• utilising micro-switch technology (Lancioni, O’Reilly & Basili, 2001)
• Intensive Interaction (Watson, & Fisher, 1997)
• Objects of Reference (Jones, Pring & Grove, 2002) and
• creative arts therapy (Graham, 2004),
and indirect approaches:
• environmental modification (Vlaskamp, de Geeter, Huijsmans, & Smit, 2003) and
• staff and parent training (Bloomberg, West & Iacono, 2003).
The number of evaluations in all areas except microswitching and, to a lesser extent, intensive interaction, was very small. It was also unclear to what extent each of these approaches was being used in practice with children or adults with profound impairments.
Of these approaches, use of Objects of Reference and micro-switching can be seen as precursors to the introduction of more formal AAC. Of interest, was the extent of use of these approaches, and any others which might support the introduction of alternative and augmentative communication.
This study has explored the interventions used by speech and language therapists (SLTs) with this client group in the UK, together with the rationales for their clinical decisions, thus providing the “expert clinical opinion” component of evidence-based practice.
Aims
1. To investigate which communication intervention approaches are used most commonly by SLTs working with children and adults with profound intellectual disability.
2. To explore the rationales given by SLTs when deciding on communication assessment and intervention for clients with profound intellectual disability, with a focus on those approaches that might be seen as precursors to the introduction of more formal AAC.
Method
Design: An exploratory investigation using a survey to gather information from SLTs about current practice and rationales for clinical decisions around communication assessment and intervention for children and adults with PID.
Survey Design & Piloting: The design of the survey was informed by discussion within the IASSID Profound Disability Special Interest Research Group, consultation with experienced speech and language therapists and the literature on survey design. The survey collected data about the published and unpublished assessments and interventions used by SLTs, the factors that influenced their choices and the reasons they gave for selecting them.
The survey, prior to distribution, was piloted by three experienced SLTs and refined for clarity and ease of use.
Participants, Sampling & Recruitment: Participants were SLTs who identified themselves as working with children and/or adults with PID in the United Kingdom. Multiple, non-probability sampling techniques were used to maximise response rate, these included purposive, snowball and convenience sampling.
Data Collection: The RCSLT circulated the survey to Special Interest Groups (SIG) and advertised it in their Bulletin and CPD Newsletter. An introductory letter, information sheet, consent form and a copy of the survey were sent to those asking to take part. Anonymity, confidentiality, voluntary participation and data protection were assured. Participants returned the survey and consent forms via email or post. Surveys were coded and data was entered into SPSS.
Fifty-five SLTs responded to the survey, 25 worked exclusively with adults, 20 with children and 10 with both. In total 35 SLTs worked with adults with PID and 29 worked with children with PID.
Data Analysis: Descriptive and content analyses were employed to explore the quantitative and qualitative data respectively (Wilkinson, 2003).
Results
Objects of Reference are one of the most commonly reported intervention approaches, cited by 73% of SLTs working with children and 77% of those working with adults, despite very limited evidence for its effectiveness.
In contrast, the approach with the most evidential support, microswitching, appears within “Cause and Effect”, but was reported as used by only 10.9% of respondents (with children: 14%, with adult: 7%).
Although people with profound intellectual impairment might be seen as presymbolic, or at very early stages of symbolic development, symbolic approaches were used by 29% of respondents, though this was far more frequent with children (41%) than with adults (23%).
Reasons given for using Objects of Reference were primarily to develop the user’s ability to understand and predict events. Specific reference to working towards AAC was made by only one respondent (<2%).
Microswitching was regarded as important in developing cause and effect relationships and the beginning of intentional communication. Specific reference to AAC was again made by only one respondent.
Conclusion
There is a mismatch between the approaches reported as used by SLTs with people with PID, and those evaluated in published research. It could be argued both that further research is required to evaluate commonly used, but relatively unevaluated approaches such as Objects of Reference. Also, there is a need for in-service education to alert SLTs to the evidence base supporting certain under-used approaches.
Communication interventions used with this client group do not typically seem to be viewed as leading towards more formal AAC approaches. This issue would benefit from further discussion.
I wonder if similar studies have been done in OT, Physio, education, or other areas?
I haven't included the references - give me a yell if you want them too.
Introduction
Significant impairments in language and communication are a core feature of profound intellectual disability (PID, Arthur-Kelly, Bochner & Mok, 2007; Lacey & Ouvry, 1998). Many people with PID will have additional sensory or physical disabilities, complex health needs or mental health difficulties. Children and adults with profound intellectual disability can thus be seen as one of the most vulnerable groups in society. Royal College of Speech & Language Therapists’ (RCSLT) Clinical Guidelines state that speech and language therapy should be available to people with profound disability, however, the evidence base for assessment and intervention in this area is small and fragmented.
A recent review identified six intervention approaches for this client group for which evidence was available. These were direct approaches:
• utilising micro-switch technology (Lancioni, O’Reilly & Basili, 2001)
• Intensive Interaction (Watson, & Fisher, 1997)
• Objects of Reference (Jones, Pring & Grove, 2002) and
• creative arts therapy (Graham, 2004),
and indirect approaches:
• environmental modification (Vlaskamp, de Geeter, Huijsmans, & Smit, 2003) and
• staff and parent training (Bloomberg, West & Iacono, 2003).
The number of evaluations in all areas except microswitching and, to a lesser extent, intensive interaction, was very small. It was also unclear to what extent each of these approaches was being used in practice with children or adults with profound impairments.
Of these approaches, use of Objects of Reference and micro-switching can be seen as precursors to the introduction of more formal AAC. Of interest, was the extent of use of these approaches, and any others which might support the introduction of alternative and augmentative communication.
This study has explored the interventions used by speech and language therapists (SLTs) with this client group in the UK, together with the rationales for their clinical decisions, thus providing the “expert clinical opinion” component of evidence-based practice.
Aims
1. To investigate which communication intervention approaches are used most commonly by SLTs working with children and adults with profound intellectual disability.
2. To explore the rationales given by SLTs when deciding on communication assessment and intervention for clients with profound intellectual disability, with a focus on those approaches that might be seen as precursors to the introduction of more formal AAC.
Method
Design: An exploratory investigation using a survey to gather information from SLTs about current practice and rationales for clinical decisions around communication assessment and intervention for children and adults with PID.
Survey Design & Piloting: The design of the survey was informed by discussion within the IASSID Profound Disability Special Interest Research Group, consultation with experienced speech and language therapists and the literature on survey design. The survey collected data about the published and unpublished assessments and interventions used by SLTs, the factors that influenced their choices and the reasons they gave for selecting them.
The survey, prior to distribution, was piloted by three experienced SLTs and refined for clarity and ease of use.
Participants, Sampling & Recruitment: Participants were SLTs who identified themselves as working with children and/or adults with PID in the United Kingdom. Multiple, non-probability sampling techniques were used to maximise response rate, these included purposive, snowball and convenience sampling.
Data Collection: The RCSLT circulated the survey to Special Interest Groups (SIG) and advertised it in their Bulletin and CPD Newsletter. An introductory letter, information sheet, consent form and a copy of the survey were sent to those asking to take part. Anonymity, confidentiality, voluntary participation and data protection were assured. Participants returned the survey and consent forms via email or post. Surveys were coded and data was entered into SPSS.
Fifty-five SLTs responded to the survey, 25 worked exclusively with adults, 20 with children and 10 with both. In total 35 SLTs worked with adults with PID and 29 worked with children with PID.
Data Analysis: Descriptive and content analyses were employed to explore the quantitative and qualitative data respectively (Wilkinson, 2003).
Results
Objects of Reference are one of the most commonly reported intervention approaches, cited by 73% of SLTs working with children and 77% of those working with adults, despite very limited evidence for its effectiveness.
In contrast, the approach with the most evidential support, microswitching, appears within “Cause and Effect”, but was reported as used by only 10.9% of respondents (with children: 14%, with adult: 7%).
Although people with profound intellectual impairment might be seen as presymbolic, or at very early stages of symbolic development, symbolic approaches were used by 29% of respondents, though this was far more frequent with children (41%) than with adults (23%).
Reasons given for using Objects of Reference were primarily to develop the user’s ability to understand and predict events. Specific reference to working towards AAC was made by only one respondent (<2%).
Microswitching was regarded as important in developing cause and effect relationships and the beginning of intentional communication. Specific reference to AAC was again made by only one respondent.
Conclusion
There is a mismatch between the approaches reported as used by SLTs with people with PID, and those evaluated in published research. It could be argued both that further research is required to evaluate commonly used, but relatively unevaluated approaches such as Objects of Reference. Also, there is a need for in-service education to alert SLTs to the evidence base supporting certain under-used approaches.
Communication interventions used with this client group do not typically seem to be viewed as leading towards more formal AAC approaches. This issue would benefit from further discussion.
I wonder if similar studies have been done in OT, Physio, education, or other areas?
International Conference
The abstracts for the IASSID Europe in the PIMD SIRG (Profound intellectual and multiple disabilities special interest research group) are available online at the following link:
http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2010.00589.x/abstract
There are more than forty presentations being done about research involving people with PIMD, their families, and paid supports.
Unfortunately, I am not going, but know a few people who will be there. I'll see if I can get some reports.
http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2010.00589.x/abstract
There are more than forty presentations being done about research involving people with PIMD, their families, and paid supports.
Unfortunately, I am not going, but know a few people who will be there. I'll see if I can get some reports.
Upcoming PIMD conference in Victoria
The following has been taken from the ECAPSS newsletter.
Communicate, Participate, Enjoy!
Solutions to Inclusion
Conference – 21st & 22nd March, 2011
This conference will focus on how to support children and adults with profound intellectual and multiple disabilities to participate and be included in everyday activities. The programme will offer a wide range of practical presentations in the areas of communication, behaviours of concern, sensory-focused practice and inclusion.
Programme and registration details will be available on the Scope website soon.
I'll cross post here as soon as I hear more
Communicate, Participate, Enjoy!
Solutions to Inclusion
Conference – 21st & 22nd March, 2011
This conference will focus on how to support children and adults with profound intellectual and multiple disabilities to participate and be included in everyday activities. The programme will offer a wide range of practical presentations in the areas of communication, behaviours of concern, sensory-focused practice and inclusion.
Programme and registration details will be available on the Scope website soon.
I'll cross post here as soon as I hear more
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...
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.
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?
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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
Monday, June 28, 2010
ECAPSS
Wednesday, May 12, 2010
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!
Wednesday, May 5, 2010
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
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
Monday, April 19, 2010
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
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
Wednesday, April 14, 2010
upcoming event - Raising Our Sights
Cross posting this event that might be of interest (related to below mentioned report)
Raising our sights: services for adults with profound intellectual and multiple disabilities
Professor Jim Mansell
Friday 16 April 2.00pm – 5.00pm
Presented by Professor Jim Mansell, Director of the Tizard Centre, University of Kent
Implementation of new government policy for people with intellectual disabilities in England ('Valuing People') after 2001 has not made sufficient progress for people with more complex needs. A revision of the policy has identified this ('making it happen for everyone') as a goal. One of the groups identified as not receiving better services quickly enough are adults with profound intellectual and multiple disabilities. This master class describes the results of a review of services for adults with profound intellectual and multiple disabilities and its recommendations for action. Participants in the master class will have the opportunity to assess Victorian policy and practice in the light of the issues identified.
Enquiries to Professor Christine Bigby, C.Bigby@latrobe.edu.au - bookings essential
Raising our sights: services for adults with profound intellectual and multiple disabilities
Professor Jim Mansell
Friday 16 April 2.00pm – 5.00pm
Presented by Professor Jim Mansell, Director of the Tizard Centre, University of Kent
Implementation of new government policy for people with intellectual disabilities in England ('Valuing People') after 2001 has not made sufficient progress for people with more complex needs. A revision of the policy has identified this ('making it happen for everyone') as a goal. One of the groups identified as not receiving better services quickly enough are adults with profound intellectual and multiple disabilities. This master class describes the results of a review of services for adults with profound intellectual and multiple disabilities and its recommendations for action. Participants in the master class will have the opportunity to assess Victorian policy and practice in the light of the issues identified.
Enquiries to Professor Christine Bigby, C.Bigby@latrobe.edu.au - bookings essential
Friday, March 26, 2010
New UK report: Raising our Sights
See new report by Jim Mansell on services for people with PIMD.
To find out more and link to the report click here.
Tuesday, March 23, 2010
Intensive Interaction ‘DownUnder’ 2
Sharing this information...
Intensive Interaction ‘DownUnder’ 2
Friday 4 & Saturday 5 March 2011
Adelaide, South Australia
Our first conference in Brisbane 2008 heard presentations about a broad range of practice and celebrated the many interesting journeys which had led to excellent beginnings and practices in schools and other settings.
However all practitioners know that following the initial surge of response and interactive exploration that is associated with their learners’ early encounters with Intensive Interaction, at some time reaches a plateau. The plateau often begins to open up as the learner begins to explore the familiar structure of established interactions. A similar plateau occurs in the practitioners’ certainty about the direction they are travelling and their own confidence While we are sure many delegates will still be interested to hear accounts of how your interactive seeds have sprouted and your cultures are growing, the theme for the conference in 2011
Australasian Conference on Intensive Interaction in Adelaide is "Exploring the Plateau"
We welcome your contributions about the interactive paths your learners have explored and how you have accompanied them the measures you have taken to embed Intensive Interaction into the ethos of your workplace the good practices and organisational structures you have identified as the most useful to give you the freedom to practice Intensive Interaction in your context. We welcome submissions and contributions from special educators, therapists, administrators, carers
and parents using the approach with learners who experience profound intellectual and multiple disabilities, or those learners whose severe-profound intellectual disabilities are augmented by autistic spectrum disorders.
Building on the momentum that is accumulating in Australia and New Zealand, our conference will again present a forum to reflect on and refine the uses of evidence based practice in a variety of settings, including schools, home and workplaces and provide an opportunity to develop the professional networks which are emerging across the region.
For more information go to http://www.ammp.com.au/iid2/
Upcoming Workshop in Victoria - Armchair travel
The following workshop is being conducted by Communication Resource Centre - I have no connection with it - but it looks great!
This workshop will provide:
Information about
• the concept of armchair travel
• the role of the senses and the impact of sensory processing disorders on the ability to participate in everyday activities
• sensory assessments
• Armchair travel resources
and strategies for
• enhancing sensory performance
• formatting armchair travel experiences
• developing other sensory-focused activities
The practical component of this workshop provides you with the opportunity to develop an armchair travel experience for someone you support.
Prerequisites:
An interest in developing individualised supports to engage people with PIMD in activities in ways that are meaningful to them.
Target audience:
Direct support staff, teachers and others who support people with PIMD.
Date: Monday - March 29th 2010
Time: 9.30am – 4.00pm
Venue: Whitehorse Library – Meeting room 1
Cost: $187.00 (Includes GST)
To register for this workshop you will need to complete an application form. See attachment
OR Telephone 03 9843 2000 OR Email crc@scopevic.org.au
Communication Resource Centre, Scope, 830 Whitehorse Rd, Box Hill 3128
This workshop will provide:
Information about
• the concept of armchair travel
• the role of the senses and the impact of sensory processing disorders on the ability to participate in everyday activities
• sensory assessments
• Armchair travel resources
and strategies for
• enhancing sensory performance
• formatting armchair travel experiences
• developing other sensory-focused activities
The practical component of this workshop provides you with the opportunity to develop an armchair travel experience for someone you support.
Prerequisites:
An interest in developing individualised supports to engage people with PIMD in activities in ways that are meaningful to them.
Target audience:
Direct support staff, teachers and others who support people with PIMD.
Date: Monday - March 29th 2010
Time: 9.30am – 4.00pm
Venue: Whitehorse Library – Meeting room 1
Cost: $187.00 (Includes GST)
To register for this workshop you will need to complete an application form. See attachment
OR Telephone 03 9843 2000 OR Email crc@scopevic.org.au
Communication Resource Centre, Scope, 830 Whitehorse Rd, Box Hill 3128
Sunday, January 17, 2010
Intensive Interaction in Australia
Just realised I hadn't said much about Intensive Interaction in Australia. Mark Barber is doing an amazing job spearheading the development of it in schools in Australia. He and Karryn Bowen has released a new DVD illustrating the technique and some of the use in schools. Give Mark a buzz if you want to find out more about the regular training that he offers. This is a technique with accumulating evidence for how it helps children and adults with PIMD develop fundamental communication skills. http://drmarkbarber.co.uk
handy online resource accross issues
In 2001 Judith Samuel and Marie Pritchard from Oxfordshire UK wrote an article called the The Ignored Minority: Meeting the Needs of People with Profound Learning Disability, in which they outlined the development of a specialist service focusing on the needs of people with PIMD. Nearly ten years later I thought I'd look at where the service is at. It was great to see that they appear to be going strong and have published some of their tools online (e.g. pre hearing screening, continence audit, comfort assessment, and intensive interaction work). Very handy.http://www.oldt.nhs.uk/aboutus/ourservices/community/MDRTResourceCentre.aspx
Friday, January 1, 2010
Learning from mistakes abroad
Toward the end of last year Beverly Dawkins published the following article: Dawkins, B. (2009). Valuing Tom: will Valuing People Now change the lives of people with profound and multiple learning disabilities? Tizard Learning Disability Review, 14(4), 3-12.
It is a response to the UK Valuing People Now policy shift and its impact on people with PIMD in the UK. It highlights the many ways in which the current policy has let down people with PIMD:
- decreased access to day services
- poor planning
- continued discrimination in health context leading to uneccessary pain and, at times, death
- continued inadequate access to advocacy
- ...
New initiatives attempting to improve the lives of people with PIMD in the UK are highlighted: Emerson's demographic study, Mencap's various studies...
Although this is based in the UK, I believe this is highly relevent in the Australian context, both in terms of current and future issues.
Paradigms and pragmatics
I'm busily working on my thesis. Read this quote, which I thought was worth sharing.
“Although issues such as community-based supports, quality of life, and normalization remain equally important to nonambulatory persons with PMR [profound mental retardation], a failure to plan for their day-to-day needs can result in decreased access to appropriate health-care services, deterioration in functioning, and overreliance upon a group of poorly trained and isolate caregivers”
- Kobe, F. H., Mulick, J. A., Rash, T. A., & Martin, J. (1994). Nonambulatory persons with profound mental retardation: Physical, developmental, and behavioral characteristics. Research in Developmental Disabilities, 15(6), 413-423. doi: 10.1016/0891-4222(94)90026-4
“Although issues such as community-based supports, quality of life, and normalization remain equally important to nonambulatory persons with PMR [profound mental retardation], a failure to plan for their day-to-day needs can result in decreased access to appropriate health-care services, deterioration in functioning, and overreliance upon a group of poorly trained and isolate caregivers”
- Kobe, F. H., Mulick, J. A., Rash, T. A., & Martin, J. (1994). Nonambulatory persons with profound mental retardation: Physical, developmental, and behavioral characteristics. Research in Developmental Disabilities, 15(6), 413-423. doi: 10.1016/0891-4222(94)90026-4
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