Monday, October 31, 2011

Culture or absolute?

One of the things that struck me while visiting Biwako Gakuen was the amazing bathroom that I went into. There was submersible bath, a plinth that got pushed into a cavern to which a spray shower could be used, and a plinth for washing all in a large room. I heard the statements in my head that may be made by people in Australia "oh terrible, what about privacy". But in Japan concepts of privacy are very different. Communal bathing is not uncommon in the steaming hot Japanese bath.
It took me back to my visit to an institution in the Netherlands where shared bedrooms were used. I was challenged with the perspective of in whose best interest was it to be in a "private" bedroom particularly when you had a physical disability, vision impairment, and intellectual disability. I've been struck by this thought - what is the difference between a seclusion room and a private bedroom.
Traveling to different cultures is enormously challenging. What are the absolutes in life quality? What are our culturally imposed norms? What is in the best interest of the person with PIMD - what matters to them?

Japan trip - some brilliant things happening

So a couple of weeks ago I had the pleasure of attending the Asia-Pacific IASSID PIMD roundtable. There were presenters from Japan, Malaysia, Vietnam, Taiwan, and me. There were also many poster presentations. On the second day there was a service visit - more about that in a moment.
The trip was fascinating. I would love to spend more time translating the Japanese practice to the English speaking world. Japan has a large and long run association focusing on what they called SMID: Severe and Multiple Intellectual Disability. This includes families, doctors, allied health. It is very active. Within that is people with PIMD.
Additionally they have a large number of people considered to be Medical Care Dependent Group (MCDG). These are people who largely have tracheotomy, ventilation, IV sustenance, and other medical complications in addition to severe ID. It was fascinating finding out more about this group. I met some of these adults. They are a growing number in Japan. I need to find out more about their presence in Australia. Issues for them cut to the core of whose lives are seen as viable.
I had the pleasure of visiting Biwako Gakuen (this site is in Japanese, but you can get a general idea by running through it in a translator like Google Translate). I saw some excellent support here with the most profoundly disabled people that I have met. I observed and interacted with people in small (no more than 8). There always seemed t be present engaged staff and volunteers attending to people on an emotional level.
One of the developers of the institution was Kazuo Itoga. A brief biography of him can be found at He said "We are not seeking pity in bringing the light of the world to these children, rather polishing them since the shine brightly by themselves."
I'll write down further thoughts about the visit in the coming weeks...

Thursday, October 6, 2011

Off to Japan

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
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

Involve Me

Great new resource from Mencap in UK. A beautiful multimedia package. Check out the website at
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...

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

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.


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: 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 for the main report and 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

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).