Organisations that might be relevant to supporters of people with PIMD

Some of these organisations I know a fair bit about, some not at all. They are professional organisations that might be of relevance to people with PIMD. Some have conferences, newsletters, websites. Just thought I'd share some I know of.
Sheri
PANDDA - The Professional Association of Nurses in Developmental Disability Areas
AGOSCI - Formerly Australian Group on Severe Communication Impairment
ASSID - Australasian Society for the Study of Intellectual Disability
Spot On DD - Speech Pathologists, Physiotherapists, and Occupational Therapists who work in the area of Developmental Disability
ARATA - Australian Rehabilitation & Assistive Technology Association
Please share others you know of...

Raising Our Sights - video

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.

Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities?

I've just published a new article on the problems with age-appropriateness concept. Hope it gets people talking about the pros and cons, rather than just accepting that because policy says it has to be it has to be.
Forster, S. (2010). Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities? Journal of Intellectual and Developmental Disability, 35, 129-131. doi: 10.3109/13668251003694606

Changing Places in Australia!!

The Changing Places campaign in the UK has made leaps in ensuring that there are REALLY accessible bathrooms available for people with PIMD and their supporters. Now Changing Places is infiltrating Australia.
I asked Kathryn Allen to prepare a blurb for me about a bathroom she's been involved in that is up with Changing Places standards. Exciting news indeed!

People with severe disabilities will be able to enjoy the health benefits of a trip to the public pool thanks to facilities at Brisbane City Council’s new Colmslie Pool which opened on 1 July 2010. The new change room with a shower and toilet in the indoor pool hall is designed to the “Changing Places” standards for people with severe disabilities.

The room provides a height adjustable adult-sized changing bench/shower trolley and a tracking hoist system, with adequate space in the changing area for the disabled person and up to two carers. The track also goes from within the change room to the indoor pool so people only need to be moved into the sling once to access the pool. The indoor pool is heated to 32 degrees Celsius, is 1.2m deep and has ramp access in addition to the track and hoist.

For more info on Changing Places click here. Be sure to check out the real-life stories!
To contact Kathryn, email kathryn.allen@brisbane.qld.gov.au

ECAPSS

Just noticed the online order form for the ECAPSS Newsletter - (Enhancing Communication And Participation Through Sensory Stimulation)
Love it when things are made easier!

PIMD in Australia in PMLD LINK UK

PMLD LINK is a magazine in the UK which provides "news and information for everyone working with people with profound and multiple learning disabilities". I submitted a paper to their most recent edition focusing on International Perspectives.
It gives a brief overview of the situation in Australia (as I see it) and then introduces some of the people working in Australia to improve the lives of people with PIMD.
I can't work out a way to link the doc/pdf to the blog at the moment, but if you'd like to see the paper that just give me a hoy!

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

Feedback from Master Class

Last Friday I went to the Master Class at Latrobe Uni by Jim Mansell about his recent report "Raising our sights: Services for adults with profound intellectual and multiple disabilities".
There was probably about 50 people there, with lots of people from Yooralla and a handful of therapist colleagues.
Jim did an overview of the report, then showed a DVD that goes with it (I'm trying to get hold of this), and then we did small group discussion on themed areas and their relationship to Victoria.
It was great to hear someone being specific and using the term profound intellectual and multiple disability, which I think does much to ensure a shared understand of the group and launch off lobbying. Jim was also very good at explaining the context of the report - it is written for policy makers, in language that hopefully they can understand and act upon - it is not a practice guide.
If you want to have a look at the report you can download it from http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114347.pdf. The video is supposed to be linked in the future - it will be an excellent resource showing some good big scale practice (e.g., use of personal funding for shared accommodation) and small scale practice (e.g., some really nice interactions with the people with PIMD)
sheri

upcoming event - Raising Our Sights

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

New UK report: Raising our Sights

See new report by Jim Mansell on services for people with PIMD.
To find out more and link to the report click here.