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.
Friday, October 22, 2010
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
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