'Stuck at Home' report from Mencap

This was also in the latest edition of PMLD LINK.

Mencap report reveals that 1 in 4 adults with a learning disability are stuck at home due to cuts to day services

This report highlights the number of people in the UK who now don't access any day service. The blurb highlights funding cuts to be a reason for day services closing. But I can't help wondering if the systematic devaluing of the services and the agenda for individualisation has also resulted in people getting lost in the cracks?
I must read the whole report.

Palliative care

I just received the latest issue of PMLD LINK from the UK.
Some of you may be familiar with Victoria, who features in Jim Mansell's Raising Our Sights video. In the latest PMLD LINK edition there is a great article by her mum, Jean Willson. The article focuses on realizing the value of engaging with a palliative care plan for Victoria as she becomes more frail. The article is positive, focusing on how to make the best out of Victoria's every day. Thank you Jean and Victoria for sharing Victoria's journey.

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

It's been a while since I've been on. See below request from Andrew in England who is writing a book on young adults with PIMD and would like input from other countries... "Andrew Colley" wrote: Hello, I am currently doing some research into educational provision for young people with profound and multiple learning difficulties (PMLD) in the US, Canada and Australia. If there is anyone out there who can help with info about Australia and would be interested in filling in a short questionnaire, please get in touch. Many thanks Andrew Colley Edith Borthwick Special School, Bocking, Braintree, Essex, UK.

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 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...

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
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

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!

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...

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/