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

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

International Conference

The abstracts for the IASSID Europe in the PIMD SIRG (Profound intellectual and multiple disabilities special interest research group) are available online at the following link:

http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2010.00589.x/abstract

There are more than forty presentations being done about research involving people with PIMD, their families, and paid supports.

Unfortunately, I am not going, but know a few people who will be there. I’ll see if I can get some reports.

Upcoming PIMD conference in Victoria

The following has been taken from the ECAPSS newsletter.
Communicate, Participate, Enjoy!
Solutions to Inclusion
Conference – 21st & 22nd March, 2011
This conference will focus on how to support children and adults with profound intellectual and multiple disabilities to participate and be included in everyday activities. The programme will offer a wide range of practical presentations in the areas of communication, behaviours of concern, sensory-focused practice and inclusion.
Programme and registration details will be available on the Scope website soon.

I’ll cross post here as soon as I hear more

All go in Rome

The European IASSID conference is on in Rome this year. I’m not going, unfortunatley, but PIMD is featuring amazingly on the program. Here are the 15 symposia organised so far (gives you a bit of an idea of what’s happening research wise around the world for this group of people):

Symposium 1: Staff attitudes in working with persons with PIMD
Moderator: Barbara Fornefeld

1. Erik Weber (Koblenz-Landau): The importance of staff attitudes in processes of deinstitutionalization – an example of field research in the area of PIMD
2. Ursula Böing (Cologne): The ‘research workshop’ – improving the professionalism of teachers educating students with PIMD through a reflective process
3. Krystie DeZonia (Californië): Influences on paraprofessional decision-making when working with adults with profound and multiple disabilities

Symposium 2: New approaches in assessment for persons with PIMD
Moderator: Jean Jacques Detraux

1. Pia Bienstein (Cologne): Functional assessment procedures to assess self injurious behavior in people with intellectual disabilities: a postal survey in German psychiatric clinics and facilities
2. Vera Munde (Groningen): Alertness observations in individuals with profound intellectual and multiple disabilities
3. Pieter Vos, Paul de Cock, Katja Petry, Wim van den Noortgate, Bea Maes (Leuven): Do you know what I feel? A first step towards a physiological measure of the subjective well-being of persons with profound intellectual and multiple disabilities.

Symposium 3: Advanced diagnostics in children with severe neurological impairment and ID: instrument development and feasibility
Moderator: Corine Penning

1. Sonja Mensch (Rotterdam): Development and reliability of MOKAVIC, a new instrument for evaluation of small motor changes in children with severe neurological impairment and ID
2. Sandra Mergler (Rotterdam): Dual energy x-ray Absorptiometry (DEXA) in children with severe neurological impairment and ID: artefacts and disrupting factors
3. Corine Penning (Rotterdam): A new questionnaire for the evaluation and follow-up of health-related quality of life of children with severe neurological impairment and ID

Symposium 4: Nutrition and bone health in children with neurological impairment and ID
Moderator: Corine Penning

1. Sandra Mergler (Rotterdam): Prevalence and risk factors of low bone mineral density in children with severe neurological impairment and ID
2. Corine Penning (Rotterdam): Nutritional assessment in children with severe neurological impairment and ID: current state of the art and research needs
3. Corine Penning / Sandra Mergler (Rotterdam): Fine-tuning of commonly used nutritional assessment methods using stable isotopes: development of group-specific equations for children with severe neurological impairment and ID

Symposium 5: Health issues in persons with PIMD (1)
Moderator: Annette Van der Putten

1. Sui Sone (Japan): A study about cancer in adults with profound intellectual and multiple disabilities
2. Matsubasa (Japan): A study of staff work on patients with intensive medical care in an institutional setting for persons with severe motor and intellectual disabilities
3. Jenny Miller & Jenny Whinnett (Dundee): Developing practice placements for allied health professionals in family home settings: experiencing a day in the life of families caring for individuals with PIMD

Symposium 6: Health issues in persons with PIMD (2)
Moderator: Loretto Lambe

1. Jin-ying Chen & Nan-chieh Chen (Taiwan), Communication between persons with PIMD and caregivers in hygienic care-problems encountered and strategies applied
2. Jenny Whinnett & Loretto Lambe (Dundee): Postural care and protection of body shape for people with PIMD: training for family and paid carers
3. Michael Brown, Loretto Lambe & Brenda Garrard Young (Dundee): Invasive procedures: breaking barriers and achieving control for people with profound intellectual disabilities

Symposium 7: Motor activation in persons with profound intellectual and multiple disabilities
Moderator: Carla Vlaskamp

1. Annette van der Putten & Carla Vlaskamp (Groningen): Physical activity in persons with profound intellectual and multiple disabilities; research into the type and amount of physically focussed activities in daily practice
2. Carla Vlaskamp & Annette Van der Putten (Groningen): Physical activities in persons with profound intellectual and multiple disabilities; when and how they are offered
3. A. Waninge, R. Van Wijck, B. Steenbergen, C.P. van der Schans (The Netherlands): Measuring physical fitness in persons with profound intellectual and multiple disabilities

Symposium 8: Behaviour problems in persons with PIMD
Moderator: Carla Vlaskamp

1. Petra Poppes, Annette van der Putten & Carla Vlaskamp (Groningen): Frequency and severity of challenging behaviour in persons with profound intellectual and multiple disabilities (PIMD)
2. Greet Lambrechts & Bea Maes (Leuven): Staff’s emotions, attributions, and reactions towards challenging behaviour : an interview study
3. Jill Bradshaw (UK): Staff attributions of challenging behaviour and perceptions of communication

Symposium 9: Multi-sensory-storytelling: a cross-European implementation (1)
Moderator: Barbara Fornefeld

1. Nicola Grove & Jane Harwood (London): Narrative with non speakers: how does it work?
2. Anke Gross (Germany): Stories of Empowerment – Qualitative Guided Interviews with Members of an Inclusive Literacy Program
3. Hannah Young, Loretto Lambe & Maggi Fenwick (Dundee): Using multi-sensory storytelling techniques with people with profound intellectual and multiple disabilities to encourage learning of sensitive issues

Symposium 10: Multi-sensory-storytelling: a cross-European implementation (2)
Moderator: Loretto Lambe

1. Annet ten Brug, Annette van der Putten & Carla Vlaskamp (Groningen): Quality and effectiveness in multi-sensory storytelling
2. Anneleen Penne & Bea Maes (Leuven): Staff behaviour in interaction with persons with PIMD during multi-sensory-storytelling sessions
3. Barbara Fornefeld: mehr¬Sinn Geschichten® (Cologne): A Way of Cultural Participation for Persons with PIMD

Symposium 11: Communication and interaction with persons with PIMD (1)
Moderator: Juliet Goldbart

1. Colin Griffiths (Dublin): Attuning: a theory of interaction of people with severe and profound intellectual and multiple disabilities and their carers
2. Ine Hostyn, Marlene Daelman, Marleen Janssen, Bea Maes (Leuven): Meaning making in dialogue between persons with PIMD and direct support staff
3. Jenny Wilder (Sweden): Interaction: proximal processes of children with profound multiple disabilities

Symposium 12: Communication and interaction with persons with PIMD: the perspective of families (2)
Moderator: Bea Maes

1. Jenny Wilder (Sweden): Children with PIMD: family accommodation, social networks and interaction
2. Juliet Goldbart & Sue Caton (Manchester): A person first: parent’s views on carers’ communication with their sons and daughters with profound disabilities
3. Suzanne Jansen, Annette van der Putten & Carla Vlaskamp (Groningen): What do parents find important in the care for their child with profound intellectual and multiple disabilities

Symposium 13: Interventions
Moderator: Krystie DeZonia

1. Hefziba Lifshitz (Israel): Effect of the MISC intervention on cognitive, affective and behavioral functioning of adults with severe intellectual disability
2. Dr. Maria José Cid (Barcelona): The effect of Snoezelen sessions on the quality of life in adults with profound intellectual disabilities
3. Vera Munde (Groningen): Alertness and Snoezelen in individuals with profound intellectual and multiple disabilities

Symposium 14: The application of technology in facilitating positive change in the lives of individuals with PIMD
Moderator: Annette Van der Putten

1 Guilio Lancioni, Assistive technology in people with PIMD
2 Saskia Damen, Usability and effectiveness of a technological interaction device in adults with PIMD
3 Dick Lunenborg, Coordinating socio-educational progress of children with PIMD in the school and home setting

Symposium 15: Thinking and people with PIMD
Moderator: Jean Ware

1. Rachel Hughes, The attribution of thinking to people with PIMD by their carers, relatives and friends
2. Phil Martin, Developing thinking skills in a school for learners with SLD / PMLD in Wales
3. Jean Ware, Thinking about thinking: precursors and devlopment of cognition in learners with PIMD

Intensive Interaction ‘DownUnder’ 2


Sharing this information…
Intensive Interaction ‘DownUnder’ 2
Friday 4 & Saturday 5 March 2011
Adelaide, South Australia

Our first conference in Brisbane 2008 heard presentations about a broad range of practice and celebrated the many interesting journeys which had led to excellent beginnings and practices in schools and other settings.
However all practitioners know that following the initial surge of response and interactive exploration that is associated with their learners’ early encounters with Intensive Interaction, at some time reaches a plateau. The plateau often begins to open up as the learner begins to explore the familiar structure of established interactions. A similar plateau occurs in the practitioners’ certainty about the direction they are travelling and their own confidence While we are sure many delegates will still be interested to hear accounts of how your interactive seeds have sprouted and your cultures are growing, the theme for the conference in 2011
Australasian Conference on Intensive Interaction in Adelaide is “Exploring the Plateau”
We welcome your contributions about the interactive paths your learners have explored and how you have accompanied them the measures you have taken to embed Intensive Interaction into the ethos of your workplace the good practices and organisational structures you have identified as the most useful to give you the freedom to practice Intensive Interaction in your context. We welcome submissions and contributions from special educators, therapists, administrators, carers
and parents using the approach with learners who experience profound intellectual and multiple disabilities, or those learners whose severe-profound intellectual disabilities are augmented by autistic spectrum disorders.
Building on the momentum that is accumulating in Australia and New Zealand, our conference will again present a forum to reflect on and refine the uses of evidence based practice in a variety of settings, including schools, home and workplaces and provide an opportunity to develop the professional networks which are emerging across the region.
For more information go to http://www.ammp.com.au/iid2/

PIMD IASSID Cape Town

My apologies for no blogs recently. The problem has been that I’ve not known where to start and I’m also experiencing some post culture shock from being in South Africa. Two weeks ago I was at the IASSID (International Association for the Scientific Study for Intellectual DIsability). At the conference the PIMD special interest research group managed to pull together a pre-conference workshop and numerous symposiums specifically looking at people with profound intellectual disabilities. Now selecting what to share is difficult, so I thought I’d side-step and instead share some quotes from Nelson Mandela that are relevent to people with PIMD.
“We accord a person dignitiy by assuming that they are good, that they share human qualitites we ascribe to ourselves”
“People are human beings, produced by the society in which they live. You encourage people by seeing good in them”
“It is what we make out of what we have, not what we are given, that separates one person from another”
“I am what I am both as a result of people who respected me and helped me, and those who did not respect me and treated me badly”

sheri