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?
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 http://www.biwakogakuen.or.jp/ (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 http://www.blogger.com/img/blank.gifgroups (no more than 8). There always seemed thttp://www.blogger.com/img/blank.gifo 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 http://www.itogazaidan.jp/english/brief_biography/index.htm. 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…
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: firstname.lastname@example.org. Alternatively, you could bring this newsletter item to the attention of a manager in the relevant organisation.
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.
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
See new report by Jim Mansell on services for people with PIMD.
To find out more and link to the report click here.
At the recent ASSID conference in Hobart I had the pleasure of hearing about a great organisation called the Argo Trust. Dayna and Leigh talked about the history and culture of this single house organisation. The essential role of families in the establishment and ongoing success of the organisation was evident. I was particularly inspired with how the organisation appeared to stand up to funding bodies to say “no, that requirement is not meaningful and appropriate for us” and stand strong to have their voices heard. Images of the community of Argo provided evidence of respect, and the voices of staff and families caried love.
The service is in New Zealand. You can find out more throught their website www.argo.org.nz and blog http://argotrust.blogspot.com/