Just a quick note to say sorry that has been so many months since I last wrote. On April 10th 2011 Keith and I gave birth to a beautiful baby boy: Curtis Calum McVilly.
We're all going well.
The experience has made me think about the developmental model that we often use to aid our understanding of adults with PIMD. Curtis at 4 months has communication skills that far surpassing the communication skills of many of the people with PIMD that I meet. He has intact vision and hearing, which contributes to his ability to gaze, smile, socially reference, and perceive distant cues. In these things the developmental model clearly does not fit in applying to adults with PIMD. However, I think some of things I do to engage with him could make sense in engagements with adults with PIMD: visual tracking of close items, locating sounds in space, using touch to reassure and calm, the use of sounds to share emotions together, the swiping of close objects.
I think I need to keep thinking about this - where the developmental model is or isn't helpful...
Monday, August 15, 2011
Wednesday, March 30, 2011
PMLD Link gone live
It was exciting to see that the UK based journal/magazine, PMLD Link has a new website.
There are heaps of back issues on there. Most excitingly, you can now subscribe online (1000 times better than my clumsy attempts at postal orders!)
Check it out http://www.pmldlink.org.uk/
Friday, March 18, 2011
New Resource: Listening to those rarely heard
cross-posting from an email from Jo - can't wait to watch this
Hi everyone,
Here is the link to the video Rhonda Joseph and I have been working on over the last year or so titled ‘Listening to those rarely heard’. This video has been designed to guide those who support adults with profound and severe intellectual disabilities to have their preferences heard through supported decision making. It has been developed by Scope with funding from DHS.
It accompanies a training package which will be online soon. However, it can be used as a standalone training tool. I need to reiterate that it has been developed for people who don’t communicate formally and although it has relevance to all decision makers it has been developed with these people in mind.
I will be presenting this at the upcoming ‘Communicate, Participate, Enjoy: Solutions to Inclusion conference’ in Melbourne next week.
Feel free to pass the link on to those who you think might be interested.
http://www.scopevic.org.au/index.php/site/resources/listeningtothoserarelyheard
Jo
Wednesday, February 16, 2011
From NDS Newsletter - Group homes for people with PIMD
I've grabbed the following from an NDS newsletter. I think it is only for Victorian group homes.
Do you know of any great group homes for people with intellectual disability and high support needs?
The ‘culture’ of group homes has long been recognised as being important in realising a good ‘quality of life’ for people with intellectual disabilities, but has been little researched.
The School of Social Work and Social Policy at La Trobe University and the Tizard Centre in the United Kingdom have been awarded funding from the Australian Research Council to learn about the ‘culture’ of highly performing group homes for people with high support needs. We want to understand what the staff culture in good group homes looks like, how it emerges, how it changes over time and what supports it. Our findings will help to inform organisational development, policy and practice in group homes.
The project brings together key researchers in this field, Professor Jim Mansell, Professor Chris Bigby, Dr Julie Beadle – Brown, Dr Marie Knox and Dr Tim Clement. Together we have much experience in investigating quality of life in group homes.
Do you know a group home for people with severe and profound intellectual disabilities that you regard as being one of the best of its kind? You may work in such a setting or know one that you consider to be a flagship service.
If you are able to recommend such a service in the broadest terms,( i.e. without breaching confidentially) that might be invited to participate in this research, please contact Professor Christine Bigby, phone: (03) 9479 1016 or email: c.bigby@latrobe.edu.au. Alternatively, you could bring this newsletter item to the attention of a manager in the relevant organisation.
Do you know of any great group homes for people with intellectual disability and high support needs?
The ‘culture’ of group homes has long been recognised as being important in realising a good ‘quality of life’ for people with intellectual disabilities, but has been little researched.
The School of Social Work and Social Policy at La Trobe University and the Tizard Centre in the United Kingdom have been awarded funding from the Australian Research Council to learn about the ‘culture’ of highly performing group homes for people with high support needs. We want to understand what the staff culture in good group homes looks like, how it emerges, how it changes over time and what supports it. Our findings will help to inform organisational development, policy and practice in group homes.
The project brings together key researchers in this field, Professor Jim Mansell, Professor Chris Bigby, Dr Julie Beadle – Brown, Dr Marie Knox and Dr Tim Clement. Together we have much experience in investigating quality of life in group homes.
Do you know a group home for people with severe and profound intellectual disabilities that you regard as being one of the best of its kind? You may work in such a setting or know one that you consider to be a flagship service.
If you are able to recommend such a service in the broadest terms,( i.e. without breaching confidentially) that might be invited to participate in this research, please contact Professor Christine Bigby, phone: (03) 9479 1016 or email: c.bigby@latrobe.edu.au. Alternatively, you could bring this newsletter item to the attention of a manager in the relevant organisation.
Thursday, January 6, 2011
New report: UK
From the PMLD Network listserve:
Dear All,
The report on "Communication and people with the most complex needs: What works and why this is essential," which Sue Caton and I started last year, is now finished. The final report is available at
http://www.mencap.org.uk/document.asp?id=20568 for the main report and
http://www.mencap.org.uk/document.asp?id=20570 for the Easy Read version.
Sue and I would like to thank, most sincerely, all the members of this forum who contributed to the report. Your input was really appreciated, and we hope you like the final version.
Best wishes
Juliet Goldbart & Sue Caton, MMU j.goldbart@mmu.ac.uk
I've had a flick through the report and I think it is excellent. It will be of interest to speech pathologists, teachers, service providers, and families. I think it also provides a a good template for other interventions (e.g., physio, OT, music therapy). I must say I'm also well chuffed to see HOP in there (a commitment to give a person 10 minutes of 1:1 time).
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.
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