Last week I had the pleasure to go to the International Society for the Scientific Study of Intellectual Disabilities World Congress in Halifax, Nova Scotia. I presented on my PhD work on affect attunement, on my current HOP study, and work exploring culture and practices supporting adults with PIMD in Japan. Here are my top ten favourite papers at the conference (in no particular order): Eric Weber – Living as an adult with PIMD – The right place to live: necessarily in a family?. Bea Maes & Carla Vlaskamp – Methodological challenges in building evidence based interventions for persons with profound intellectual and multiple disabilities. Krysti deZonia – Public perceptions of profound disability. Bea Maes – Palliative care for persons with profound intellectual and multiple disabilities. Pauline Heslop – Can a Confidential Inquiry into a person’s death make a difference? Miriam Roemer – Perception of persons with profound intellectual and multiple disabilities. Nicola Grove – Patterns of co-narration in a personal story interaction. Kaisa Martikainen and Katja Burakoff – OIVA interaction model: Supporting staff to better interaction with people with PIMD. Genevieve Petitpierre – IEP goals and objectives of adults with profound intellectual and multiple disabilities. Nan-chieh Chen – The telling body: Ethics, ethical skills and applications of caregivers faced with persons with PIMD. Sui Sone – Living situation of adults with severe motor and intellectual disabilities (SMID) in Japan. Hilary Johnson – Social communication and for adults who communicate at a symbolic but nonlinguistic level
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…