Next week Curtis and I are off to Japan for The first Asia-Pacific regional roundtable on Profound Intellectual and Multiple Disabilities (PIMD). I'll be speaking about what's happening in Australia (as far as I know). There will be presentations from Vietnam, Japan, and other places. I'm really excited to see what's going on locally!
Full report forthcoming.
20th-21st, October, 2011
Kyoto-Japan
Chair person: Prof. Tadashi Matsubasa
Professor and Chair of the Division of Severe Motor and Intellectual Disabilities, Kumamoto University Hospital
Sponsored by Japanese Society for Severe Motor and Intellectual Disabilities
Thursday, October 6, 2011
Involve Me
Great new resource from Mencap in UK. A beautiful multimedia package. Check out the website at http://www.mencap.org.uk/involveMe.
The Involve Me resource aims to increase the involvement of people with profound and multiple learning disabilities (PMLD) in decision making and consultation. The resource is the result of a three year project, supported by the Renton Foundation and run by Mencap in partnership with the British Institute of Learning Disabilities (BILD).
People with PMLD and staff took part by learning about and using different approaches to communication: sharing stories, creative communication, peer advocacy and multimedia advocacy.
I also requested the DVD and got my hot little hands on it yesterday. If you do get hold of it check out the Robbie video. It's a great video of a man who enjoys throwing a spoon and this is valued by staff rather than seen as a problematic behaviour - I love it. One day when I get time I'd love to do something on the valuing of idiosyncratic skills!
Monday, August 15, 2011
back on board slowly
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...
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...
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
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