PIMDA: Profound Intellectual & Multiple Disability Australia

Culture or absolute?

2011-10-31T11:42:00.003+11:00

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

2011-10-31T11:18:00.003+11:00

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

2011-10-06T09:18:00.001+11:00

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

2011-10-06T09:05:00.003+11:00

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

2011-08-15T15:18:00.001+10:00

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

2011-03-30T11:53:00.003+11:00

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/

New Resource: Listening to those rarely heard

2011-03-18T17:13:00.003+11:00

cross-posting from an email from Jo - can't wait to watch this
Hi everyone,

Here is the link to the video Rhonda Joseph and I have been working on over the last year or so titled ‘Listening to those rarely heard’. This video has been designed to guide those who support adults with profound and severe intellectual disabilities to have their preferences heard through supported decision making. It has been developed by Scope with funding from DHS.

It accompanies a training package which will be online soon. However, it can be used as a standalone training tool. I need to reiterate that it has been developed for people who don’t communicate formally and although it has relevance to all decision makers it has been developed with these people in mind.

I will be presenting this at the upcoming ‘Communicate, Participate, Enjoy: Solutions to Inclusion conference’ in Melbourne next week.

Feel free to pass the link on to those who you think might be interested.

http://www.scopevic.org.au/index.php/site/resources/listeningtothoserarelyheard

Jo

From NDS Newsletter - Group homes for people with PIMD

2011-02-16T13:26:00.003+11:00

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: c.bigby@latrobe.edu.au. Alternatively, you could bring this newsletter item to the attention of a manager in the relevant organisation.

New report: UK

2011-01-06T10:05:00.003+11:00

From the PMLD Network listserve:
Dear All,

The report on "Communication and people with the most complex needs: What works and why this is essential," which Sue Caton and I started last year, is now finished. The final report is available at

http://www.mencap.org.uk/document.asp?id=20568 for the main report and

http://www.mencap.org.uk/document.asp?id=20570 for the Easy Read version.

Sue and I would like to thank, most sincerely, all the members of this forum who contributed to the report. Your input was really appreciated, and we hope you like the final version.

Best wishes
Juliet Goldbart & Sue Caton, MMU j.goldbart@mmu.ac.uk

I've had a flick through the report and I think it is excellent. It will be of interest to speech pathologists, teachers, service providers, and families. I think it also provides a a good template for other interventions (e.g., physio, OT, music therapy). I must say I'm also well chuffed to see HOP in there (a commitment to give a person 10 minutes of 1:1 time).

More info about Communicate, Participate, Enjoy conference

2010-12-17T11:19:00.003+11:00

Here's an update on a conference coming up next March in Victoria
Communicate, Participate, Enjoy! - Solutions to Inclusion Conference - 2011

What are 'meaningful activities'?

2010-10-22T12:19:00.003+11:00

This side box was in the Lambeth report. Some of the things I agree with, some I'm not so sure about. I mean, you can't define meaningful by saying it is meaningful to the person - it circuitous, because it still doesn't say what's meaningful. What is genuinely enjoyable - and is enjoyment necessary for meaning, or is just things that provoke us to action or thought (enjoyable, frustrating, or interesting)? Where are the dividing line between what you or I might find meaningful, and what each individual with PIMD might find meaningful (does it always need to have a community parameter?)
What do you think? Have you seen any better definitions of meaningful activities
What are ‘meaningful activities’?
• They are stimulating and meaningful to the individual.
• People’s physical and health needs are supported in a dignified manner.
• The person can access the community by taking part in activities that they find genuinely enjoyable.
• They recognise that many people with PMLD experience the world largely on sensory level and take this into account.
• People are included in community activities in ways that are meaningful to each person.
• Manual handling policy and practice don’t act as a barrier to the person taking part in community activities.
• They recognise the importance of one-to-one interaction, with a workforce who are skilled in meeting complex health needs, and trained in nonformal communication techniques.
• Suitable and flexible transport is provided that enables people to physically move around their community.

New UK report: Lambeth PMLD project

2010-10-22T12:10:00.005+11:00

I wish I didn't mention UK all the time - but that's where the info is coming from.
MENCAP have just come out with a new report that might be of interest.

Mencap has recently launched a report exploring the numbers and needs of people with PMLD in Lambeth. The report will not only help Lambeth Council and NHS Lambeth better plan for this part of the population, but the project and recommendations will help other local areas to focus on the needs of people with PMLD and ensure their plans are inclusive of those with the most complex needs.

Find out more and read the report http://www.mencap.org.uk/page.asp?id=19495

What speech pathologists are doing with people with PIMD in the UK

2010-08-30T10:04:00.002+10:00

Professor Juliet Goldbart, from Manchester Metropolitan University, presented the following paper at ISAAC in Barcelona. Below is the extended abstract.
I haven't included the references - give me a yell if you want them too.

Introduction
Significant impairments in language and communication are a core feature of profound intellectual disability (PID, Arthur-Kelly, Bochner & Mok, 2007; Lacey & Ouvry, 1998). Many people with PID will have additional sensory or physical disabilities, complex health needs or mental health difficulties. Children and adults with profound intellectual disability can thus be seen as one of the most vulnerable groups in society. Royal College of Speech & Language Therapists’ (RCSLT) Clinical Guidelines state that speech and language therapy should be available to people with profound disability, however, the evidence base for assessment and intervention in this area is small and fragmented.
A recent review identified six intervention approaches for this client group for which evidence was available. These were direct approaches:
• utilising micro-switch technology (Lancioni, O’Reilly & Basili, 2001)
• Intensive Interaction (Watson, & Fisher, 1997)
• Objects of Reference (Jones, Pring & Grove, 2002) and
• creative arts therapy (Graham, 2004),
and indirect approaches:
• environmental modification (Vlaskamp, de Geeter, Huijsmans, & Smit, 2003) and
• staff and parent training (Bloomberg, West & Iacono, 2003).
The number of evaluations in all areas except microswitching and, to a lesser extent, intensive interaction, was very small. It was also unclear to what extent each of these approaches was being used in practice with children or adults with profound impairments.
Of these approaches, use of Objects of Reference and micro-switching can be seen as precursors to the introduction of more formal AAC. Of interest, was the extent of use of these approaches, and any others which might support the introduction of alternative and augmentative communication.
This study has explored the interventions used by speech and language therapists (SLTs) with this client group in the UK, together with the rationales for their clinical decisions, thus providing the “expert clinical opinion” component of evidence-based practice.
Aims
1. To investigate which communication intervention approaches are used most commonly by SLTs working with children and adults with profound intellectual disability.
2. To explore the rationales given by SLTs when deciding on communication assessment and intervention for clients with profound intellectual disability, with a focus on those approaches that might be seen as precursors to the introduction of more formal AAC.
Method
Design: An exploratory investigation using a survey to gather information from SLTs about current practice and rationales for clinical decisions around communication assessment and intervention for children and adults with PID.
Survey Design & Piloting: The design of the survey was informed by discussion within the IASSID Profound Disability Special Interest Research Group, consultation with experienced speech and language therapists and the literature on survey design. The survey collected data about the published and unpublished assessments and interventions used by SLTs, the factors that influenced their choices and the reasons they gave for selecting them.
The survey, prior to distribution, was piloted by three experienced SLTs and refined for clarity and ease of use.
Participants, Sampling & Recruitment: Participants were SLTs who identified themselves as working with children and/or adults with PID in the United Kingdom. Multiple, non-probability sampling techniques were used to maximise response rate, these included purposive, snowball and convenience sampling.
Data Collection: The RCSLT circulated the survey to Special Interest Groups (SIG) and advertised it in their Bulletin and CPD Newsletter. An introductory letter, information sheet, consent form and a copy of the survey were sent to those asking to take part. Anonymity, confidentiality, voluntary participation and data protection were assured. Participants returned the survey and consent forms via email or post. Surveys were coded and data was entered into SPSS.
Fifty-five SLTs responded to the survey, 25 worked exclusively with adults, 20 with children and 10 with both. In total 35 SLTs worked with adults with PID and 29 worked with children with PID.
Data Analysis: Descriptive and content analyses were employed to explore the quantitative and qualitative data respectively (Wilkinson, 2003).
Results
Objects of Reference are one of the most commonly reported intervention approaches, cited by 73% of SLTs working with children and 77% of those working with adults, despite very limited evidence for its effectiveness.
In contrast, the approach with the most evidential support, microswitching, appears within “Cause and Effect”, but was reported as used by only 10.9% of respondents (with children: 14%, with adult: 7%).
Although people with profound intellectual impairment might be seen as presymbolic, or at very early stages of symbolic development, symbolic approaches were used by 29% of respondents, though this was far more frequent with children (41%) than with adults (23%).
Reasons given for using Objects of Reference were primarily to develop the user’s ability to understand and predict events. Specific reference to working towards AAC was made by only one respondent (<2%).
Microswitching was regarded as important in developing cause and effect relationships and the beginning of intentional communication. Specific reference to AAC was again made by only one respondent.
Conclusion
There is a mismatch between the approaches reported as used by SLTs with people with PID, and those evaluated in published research. It could be argued both that further research is required to evaluate commonly used, but relatively unevaluated approaches such as Objects of Reference. Also, there is a need for in-service education to alert SLTs to the evidence base supporting certain under-used approaches.
Communication interventions used with this client group do not typically seem to be viewed as leading towards more formal AAC approaches. This issue would benefit from further discussion.

I wonder if similar studies have been done in OT, Physio, education, or other areas?

International Conference

2010-08-30T10:02:00.001+10:00

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

2010-08-30T10:00:00.001+10:00

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

Organisations that might be relevant to supporters of people with PIMD

2010-07-30T10:26:00.003+10:00

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

2010-07-28T11:33:00.003+10:00

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?

2010-07-14T11:19:00.002+10:00

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!!

2010-07-09T16:34:00.003+10:00

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

2010-06-28T16:04:00.003+10:00

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

2010-05-12T10:19:00.005+10:00

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

2010-05-05T20:10:00.002+10:00

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

2010-04-19T11:49:00.003+10:00

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

2010-04-14T10:40:00.003+10:00

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

2010-03-26T12:20:00.002+11:00

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

Intensive Interaction ‘DownUnder’ 2

2010-03-23T10:59:00.003+11:00

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/

Upcoming Workshop in Victoria - Armchair travel

2010-03-23T10:53:00.001+11:00

The following workshop is being conducted by Communication Resource Centre - I have no connection with it - but it looks great!
This workshop will provide:
Information about
• the concept of armchair travel
• the role of the senses and the impact of sensory processing disorders on the ability to participate in everyday activities
• sensory assessments
• Armchair travel resources

and strategies for
• enhancing sensory performance
• formatting armchair travel experiences
• developing other sensory-focused activities

The practical component of this workshop provides you with the opportunity to develop an armchair travel experience for someone you support.

Prerequisites:
An interest in developing individualised supports to engage people with PIMD in activities in ways that are meaningful to them.

Target audience:
Direct support staff, teachers and others who support people with PIMD.

Date: Monday - March 29th 2010
Time: 9.30am – 4.00pm
Venue: Whitehorse Library – Meeting room 1
Cost: $187.00 (Includes GST)

To register for this workshop you will need to complete an application form. See attachment
OR Telephone 03 9843 2000 OR Email crc@scopevic.org.au
Communication Resource Centre, Scope, 830 Whitehorse Rd, Box Hill 3128

Intensive Interaction in Australia

2010-01-17T16:15:00.004+11:00

Just realised I hadn't said much about Intensive Interaction in Australia. Mark Barber is doing an amazing job spearheading the development of it in schools in Australia. He and Karryn Bowen has released a new DVD illustrating the technique and some of the use in schools. Give Mark a buzz if you want to find out more about the regular training that he offers. This is a technique with accumulating evidence for how it helps children and adults with PIMD develop fundamental communication skills. http://drmarkbarber.co.uk

handy online resource accross issues

2010-01-17T16:08:00.004+11:00

In 2001 Judith Samuel and Marie Pritchard from Oxfordshire UK wrote an article called the The Ignored Minority: Meeting the Needs of People with Profound Learning Disability, in which they outlined the development of a specialist service focusing on the needs of people with PIMD. Nearly ten years later I thought I'd look at where the service is at. It was great to see that they appear to be going strong and have published some of their tools online (e.g. pre hearing screening, continence audit, comfort assessment, and intensive interaction work). Very handy.http://www.oldt.nhs.uk/aboutus/ourservices/community/MDRTResourceCentre.aspx

Learning from mistakes abroad

2010-01-01T13:00:00.004+11:00

Toward the end of last year Beverly Dawkins published the following article: Dawkins, B. (2009). Valuing Tom: will Valuing People Now change the lives of people with profound and multiple learning disabilities? Tizard Learning Disability Review, 14(4), 3-12.
It is a response to the UK Valuing People Now policy shift and its impact on people with PIMD in the UK. It highlights the many ways in which the current policy has let down people with PIMD:
- decreased access to day services
- poor planning
- continued discrimination in health context leading to uneccessary pain and, at times, death
- continued inadequate access to advocacy
- ...
New initiatives attempting to improve the lives of people with PIMD in the UK are highlighted: Emerson's demographic study, Mencap's various studies...
Although this is based in the UK, I believe this is highly relevent in the Australian context, both in terms of current and future issues.

Paradigms and pragmatics

2010-01-01T12:52:00.003+11:00

I'm busily working on my thesis. Read this quote, which I thought was worth sharing.
“Although issues such as community-based supports, quality of life, and normalization remain equally important to nonambulatory persons with PMR [profound mental retardation], a failure to plan for their day-to-day needs can result in decreased access to appropriate health-care services, deterioration in functioning, and overreliance upon a group of poorly trained and isolate caregivers”
- Kobe, F. H., Mulick, J. A., Rash, T. A., & Martin, J. (1994). Nonambulatory persons with profound mental retardation: Physical, developmental, and behavioral characteristics. Research in Developmental Disabilities, 15(6), 413-423. doi: 10.1016/0891-4222(94)90026-4

The Argo Trust

2009-11-08T14:04:00.007+11:00

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/

Deafblindness in people with PIMD

2009-10-05T09:24:00.002+11:00

This article may be of interest
Fellinger, J., Holzinger, D., Dirmhirn, A., Dijk, J. v., & Goldberg, D. (2009). Failure to detect deaf-blindness in a population of people with intellectual disability. Journal of Intellectual Disability Research, 53(10), 874-881. doi: 10.1111/j.1365-2788.2009.01205.x

Abstract
Background Early identification of deaf-blindness is essential to ensure appropriate management. Previous studies indicate that deaf-blindness is often missed.We aim to discover the extent to which deaf-blindness in people with intellectual disability (ID) is undiagnosed.
Method A survey was made of the 253 residents of an institute offering residential and occupational facilities for people with IDs. Data are included for the 224 individuals who were able to complete both auditory and visual assessments. Otoacoustic emissions were used to screen for hearing impairment; those who did not pass were assessed by behavioural
audiometry. Visual acuity was assessed with one of the following: EH-Optotypes, LH-Optotypes,
Teller Acuity Cards, Cardiff Acuity Cards or the Stycar Ball Vision Test.
Results Prior to the study hearing impairment had been diagnosed in 12.5% of the 224 subjects, and visual impairment in 17%. Upon completion of the study these figures rose to 46% and 38.4% respectively. Deaf-blindness was diagnosed in 3.6% of the subjects before, and in 21.4% after, the study. Most (87.5%) of the deaf-blind individuals had profound ID.
Conclusion Deaf-blindness is most often not identified either by standard medical screening or by care staff. Individuals with this disability, however, require provision of special kinds of care. Four categories of deaf-blindness are proposed, according to the severity of sensory impairment in each modality. The tests used in this study are non-invasive and are appropriate for individuals with ID and children.
Early and periodic screening for visual and hearing impairment in individuals with ID is
recommended.

New Report from UK on Numbers of people with PMLD

2009-08-04T13:58:00.004+10:00

Thanks Alex for forwarding me this report.
Eric Emerson has completed a report entitled "Estimating future numbers of adults with profound multiple learning disabilities in England" for the Centre for Disability Research at Lancaster University.
The brief report highlights an estimated sustained and growing number of adults with PMLD in England. He estimates that in the 'average' area in England with a population of 250,000, the number of adults with PMLD receiving support services will rise from 78 in 2009 to 105 in 2026.
I encourage you to read this report, which for me highlights the need for focus on people with PIMD, ensuring services that are appropriate for this group.
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_103201

Top Tips for Partnership Boards

2009-07-12T17:48:00.003+10:00

http://www.pmldnetwork.org/what_do_we_want/news_and_events_PMLD_seminar.html
The PMLD Network in the UK have put out another great resource called Top Tips for Partnership Boards. This excellent, simple brochure gives food for thought for Boards of Management and other bodies that need to listen to people with PIMD. Partnership Boards are encouraged to appoint a PMLD Champion, find out what life is like for someone with PMLD and their family, have a slot for PMLD on the agenda for each meeting, and make sure that boards consider the needs of people with PMLD in everything they do.
This last point is particularly resonant for me, as I've often considered trying to create an audit type system that enables people to critically analyse existing policies and procedures for the aplicability to the people with the most serve disabilities (adding this one to my list of things to do when I finish my PhD!)
sheri

Hearing from the seldom heard

2009-06-23T13:49:00.004+10:00

Here is a new project for BILD (British Institute of Learning Disability). It focuses on people with PIMD and advocacy, rights, and complaints. I've only had a little look, but it looks like an excellent resource.

http://www.bild.org.uk/humanrights_seldomheard.htm

Invasive Procedures

2009-06-10T23:34:00.002+10:00

The following event is to be held in Scotland tommorow - shame Scotland is a few hundred, thousand kms away... will feedback any further info I can get.

Invasive Procedures: Breaking barriers and achieving control for people with profound & complex disabilities
Discussion at the conference will contribute to the development of planned expert consensus guidelines on invasive procedures.
Individuals with profound intellectual and multiple disabilities have complex and significant healthcare needs.
For many, a wide range of invasive medical procedures are required including the management of epilepsy through the administration of rectal anticonvulsants; severe spasticity requiring Baclofen implants; the management of respiratory problems through the use of ventilators and deep suctioning; and procedures requiring non-oral feeding (gastric and nasogastric). Execution of these procedures by social care staff remains a contested area, with some staff refusing or not being allowed to carry out one or more procedures, leading to people with profound intellectual and multiple disabilities being denied services.
There is a recognised need for change in the way this vulnerable group receive care and access services, and in particular health services.
This is supported by Mencap’s Death by Indifference enquiry report and a number of other reports from across the UK, notably: Healthcare for All; Equally Well; Same as You Review; and Valuing People Now.
The research project “Practice and Policy in the Administration of Invasive Procedures for People with PIMD”, supported by the Scottish Government, is at present being undertaken by PAMIS’ Invasive Procedures Working Group. This work will be reported as background to the conference.
Speakers will address the changing needs of people with profound and multiple learning disabilities and the ethical issues underpinning invasive procedures. Family experiences will be addressed as will the training needs of parents and care staff.
Workshops will be conducted in order to develop a consensus on good practice in this area.

For further info go to the PAMIS website

Makes me think of some of the issues in Australia around training staff in the administration of intranasal midazolam for status epilepticus.

Arts and people with PIMD

2009-06-08T10:43:00.002+10:00

Mencap have released an excellent video relating to the arts and people with PIMD. The video presents segments of practice from: Oily Cart, Project Artworks, Soundabout and the Unlimited Company.
Well worth a look
www.mencap.org.uk/inthemoment

Accessible toilets ! YAY

2009-04-03T19:46:00.001+11:00

Getting out and about requires access to bathrooms - this is never easy for people who require an adult sized change table and hoist. In the UK, the Time For a Change campaign is leading the way with getting more REALLY ACCESSIBLE bathrooms around see http://www.changing-places.org/index.asp

Looks like Australia is moving on this too.
Somebody at an NDS session mentioned this the other day.
Today the Victoria Infoxchange posted the following.

News - Fully accessible community toilets and baby feeding room in Frankston central business district

Contributor: Kate Sommerville.
Source: Frankston City Council, Department of Community Development.
Posted: 01-04-2009

A fully accessible community facility has been set up at 5 Keys Street, Frankston, close to the central business district and the Frankston waterfront.

Jointly funded by Frankston City Council and the Department of Human Services, this facility is the first of its kind in a community setting in Australia. It is located in a shopfront style building in a clean and attractive setting in the heart of Frankston. Accessible parking is available at the site.

The Keys Street facility includes two fully accessible toilets with hoists and adult change tables, universal male and female toilets, a parent/child toilet and baby feeding room.

One of the accessible toilets is available 24 hours a day from Keys Street. The other is only available during operational hours (see the attached leaflet).

Both accessible toilets require use of an MLAK key which can be obtained from any member of the Master Locksmiths Association of Australia (MLAA) on the submission of documentation that the user has a disability. There is a charge of around $9.

Information about registered MLAA locksmiths can be obtained by ringing 03 9645 9995 or 1800 810 698 (toll free), or visiting the MLAA website.

The MLAK or universal key is a national key across Australia for disability related facilties including toilets and Liberty swings. The MLAK system was considered necessary to facilitate the ongoing safety of equipment. The toilets have no attendant but are cleaned and checked five times daily by city contractors.

More information is available at the Frankston Visitor Information Centre on the waterfront or at the Civic Centre, corner Young and Davey Streets, Frankston. MLAK keys can also be borrowed from these locations on the submission of photo identification.

Contact Name: Kate Sommerville
Contact Phone: 03 9784 1967
Contact Email: kate.sommerville@frankston.vic.gov.au

merits of term PMLD (PIMD)

2009-03-04T11:02:00.001+11:00

I recently submitted this to the PMLD Network mail list in response to a discussion regarding the term profound and multiple learning disability.

Interesting discussion.

Coming from a country that does not consistently use any term to refer to people with PMLD, I am a supporter of the use of the term PMLD (or PIMD profound intellectual and multiple disability). In Australia, this population is frequently invisible. Their are no collective groups like PMLD Network operating for lobbying or sharing information. People with PMLD tend to be subsumed into the "high support needs" group, but as stated by PMLD Network, this term is problematic as it is overly inclusive. Furthermore the high profile people in the high support needs group tend to be people with challenging behaviours, whose needs may be very different from people with PMLD and often responded to with more hast.

There will always be people for whom we do not know what their intellectual abilities are; for whom physical disabilities mask cognitive abilities. But I don't think this is a justification for dismissing the concept of intellectual disability altogether. Understanding intellectual disability is a way of trying to understand different realities, different motivations. Intellectual disability is not a moral judgement, it is a statement that somebody understands the world in a different way: memory, concentration, attention, learning, planning.

I recall Karen Bunning writing a few years ago about the expectancy cycle. Having low expectancies of somebody is damaging, and long recognised to be problematic. But having overly high expectancies of somebody can be equally damaging in setting the person up to perpetually fail with goals that are not achievable. How many times have you seen an intervention set up, only to have the person fail (and blame often hastily attributed to support staff, rather than evaluating the appropriateness of the intervention in the first place)? How many times have you gone along to training session or read a book and thought that the author had no understanding of the people you support, as all the techniques were based on having a symbolic understanding?

I think the term PMLD is useful and supports a shared understanding. Hopefully, this understanding of the meaning of PMLD is tempered by an understanding that we can never be 100% sure of cognitive level, that everyone is an individual, and that everyone should be supported to have the best possible life that they can have, regardless of a diagnostic category.

Sheri

Not Just Work: Exploring relationships between people with disabilities and attendant

2009-01-21T22:28:00.006+11:00

I was pointed to this website. It contains some interesting stories by support workers reflecting on their relationships with the people they support.
There is a particularly interesting reflection by somebody writing about her relationship with a woman who doesn't use speech.
I'll be interested in seeing where this website goes in the future, particularly in relation to reflecting relationships with people with PIMD.
http://notjustwork.info/

Gastrostomy resource

2009-01-14T11:31:00.003+11:00

New Resource and it is Australian!

There is a new resource out on supporting people who receive nutrition through gastrostomy. I haven't had a look at it yet, but the short snippet on the website looks good. Will let you know more when I've had a good look.

http://www.disabilityenterprises.com.au/content/well-enteral-nutrition-resource

Nate Hajdu's poem on friendship

2009-01-03T14:45:00.003+11:00

I read this poem in a book (which I'll talk more about soon). On many levels in resonated with me (whilst not being religious) and thought I'd share it. It came from the Jubilee Association of Maryland website: http://www.jubileemd.org/template/page.cfm?page_id=45

My Friend Charlie
Nate Hajdu shared this heart-felt poem at the Interfaith Disability Pre-Summit in Washington, DC on September 22, 2005.

My Friend Charlie

He is my friend: I am his friend
I help him out: He helps me to learn
I help him to learn: He helps me to grow
I help him to grow: He teaches me to accept

His struggle: Is my struggle
His vulnerability: Leads to my respect
My respect: Leads him to trust
His trust: Leads to my devotion

His availability: Feeds my desire to be needed
I keep his secrets: He keeps mine
We have an arrangement
His lack of self-consciousness: Leads to my tolerance
His constant need for stimulation: Leads to my patience
His discomfort: Sharpens my sensitivity
His unhappiness: Is my challenge
His presence: Eases my isolation
His loyalty: Leads to my loyalty
Which leads to mutual appreciation

His brokenness: Makes me accept my own brokenness
Which leads to healing
His humanity: Leads to personal connection
His steadfastness: Centers me

His smile: Is my reward
His joy: Lifts my spirits
His happiness: Gives me a sense of purpose
His struggles: Expose my anxieties
Which tests me
Then strengthens me
And in turn bolsters my faith

In guiding: I am guided
In helping: I am helped
In teaching: I am taught

In his laughter: There is joy
In that joy: There is energy
In that energy: There is spirit
In that spirit: There is grace

New book

2008-12-10T18:36:00.005+11:00

Music for Children and Young People with Complex Needs is a new book through Oxford University Press by Adam Ockelford.

Not being a muscian, I can see that this book is going to be a bit tricky for me to comprehend, however flicking through it, I know I will get a lot out of it. Ockelford breaks down taken for granted skills into meaningful chunks. For example, in his Sounds of Intent framework he looks at the various levels in reactive, proactive, and interactive stages of sound knowledge. In reactive, he starts with encounters sounds, then goes to shows emerging awareness of sounds, then to recognizing and reacting to simple patterns in sound...

I have long thought that a good langauge for describing the subtle interactions that occur with a person with a disability may best be described used musical terms - the build up, the burst, and the roll down are my gross terms, which I am sure map onto to more elegant and precise terms in music.

I look forward to reading this book and think that it will be a useful tool for music therapists, musicians, and people interested in cognition and communication.

Interaction shame???

2008-12-10T18:02:00.003+11:00

I've been noticing lately how many people seem a little apologetic when they tell me or show me what they do when they are interacting with people with PIMD. I hear things like "we just muck around", "just have cuddles and stuff", "we don't do much", "I probably baby her a bit", "you'll think I'm a bit of a loon". But the person knows that those are the things that work in interactions: playfulness, fun, repetition, quiet being together, tickles. Why is that people are apologetic about doing these things, when they are the things that contribute to a person's quality of life? Why can't people stand up and be proud (in the home, day service, and out and about) and say this is what being with this person in a meaningful way is all about?
So many great quality interactions happen in bathrooms and bedrooms behind closed doors (often people are more vocal, move more, and are most alert) where people won't be embarrassed by their playful interactions - can we get playfulness out of the closet?!?

Strengths and Needs

2008-12-01T18:00:00.003+11:00

In 2006 I heard Penny Lacey (University of Birmingham) talk about working with people with PIMD. Penny talked about a simple approach of doing a strengths and needs profile of the person. The way I remember it (though I am not sure it is 100% correct), needs was NOT a euphamism for weakness, but "what does this person need in order to be the best person they can be". So somebody with a vision impairment may have a need for people to sit 25 cm from the person's face, or need objects to be held to the left or right side, or interaction partners not to sit in front of bright windows in order to avoid looking into glare. I really like this approach of looking at what we need to do to support a person best.
David Wareing spoke last week at the ASSID Conference in Melbourne about his "shaking up the house" work. He also talked about a strengths and needs model, but he used a more systematic, but dynamic, means to determine the person's needs in the areas of cognition, communication, movement and other areas.
I think both of these approaches have much to offer for supporting high quality services for people with PIMD.

New resources

2008-11-19T17:57:00.005+11:00

Susan Fowler has just published another great resource for supporting people with PIMD.

Multisensory Rooms and Environments: Controlled Sensory Experiences for People with Profound and Multiple Disabilities. Susan Fowler: Foreword by Paul Pagliano.

This book focuses on ways to use equipment bought, or considered for purchase, for creating multisensory environments. It also offers hand hints on less expensive options for working towards the same goals.

This book follows Susan's very successful 2006 publication. In this book she offers a treasure trove of activity ideas for rich sensory-focused interactions.
Sensory Stimulation: Sensory-Focused Activities for People with Physical and Multiple Disabilities. Susan Fowler: Foreword by Hilary Johnson.

Both are enormously useful publications filling a gap in the market for activities for people with PIMD. Both are published by Jessica Kingsley.

2008-11-12T16:52:00.001+11:00

First printed in ECAPSS Newsletter April 06.

Many people may believe that it is not possible to have a conversation with somebody who does not use or understand speech. However it is possible to have wordless conversations.
The following article describes one of the types of wordless conversations that can be had.

• “Pro-vocation”
pro-1 prefix 1 favouring or supporting …. 3 forwards… 5 onwards.
vocation n. …. 2 a a person’s employment, esp. regarded as requiring dedication. (Employ 3 … keep (a person) occupied.)
provocation – provoke v.tr. 1a rouse or incite … b incite to anger …. 2 call forth; instigate …. 3 tempt; allure. 4 cause, give rise to.
The Australian Concise Oxford Dictionary (4th ed.).(2004). New York: Oxford University Press.

It’s an interaction seen often between adults, children, and infants. We tease, we tempt, we joke, we encourage. We generate a response from another person. We bring forward (pro-) and a state of being occupied (vocation) in another person. We engage them. Sometimes we engage by asking questions, telling stories, sharing successes. Sometimes we engage by provocation. We may tempt a response from somebody or even incite a small anger.

Pro-vocation can be a valuable way to enhance communication and participation.
Consider the following scenarios:
Scenario 1
1. X shows an object to Y.
2. Y demonstrates an interest in the object.
3. X holds the object just outside Y’s reach.
4. Y demonstrates frustration and more effort to reach the object.
5. X grades the distance so Y can successfully reach the object.
Scenario 2
1. Y is enjoying an object.
2. X removes the object from Y.
3. Y demonstrates frustration or pleasure with the removal.
4. X tempts Y to reach for it.
5. Y reaches out for the object and successfully gets it.
Scenario 3
1. Y is enjoying an object.
2. X reaches towards it.
3. Y pulls the object away.
4. X grasps the object.
5. Y continues to pull the object toward themselves.
6. X pulls at the object with a little force, but not enough to remove it.
7. Y pulls to hold it.
8. X lets go.

There are lots of different names for these conversations. We could call it “tug-of-war”, “you can’t-get it”, or “ooh… ooh… ooh… you got it!”. These are all conversations that may be useful for adults who have early communication skills.
Two types of responses of the person may occur:
1. The person may demonstrate a behavioural (or emotional) response such as surprise, agitation, pleasure.
2. The person may be provoked into action towards you or the object, such as looking at you or reaching to the object.

There are some important rules in pro-vocation.
• Incitement of frustration must be used sensitively. Do not incite the person if you feel that they may become angry.
• Pro-vocation must be balanced with the feeling of success. Celebrate when the person successfully gets the object from you. “You’re so strong!”
• Balance pro-vocation with other interactions, like just quietly sitting together or playing unchallenged.
• Only use pro-vocation with people that you have built a trusting relationship with. An important feature of tease is that the person knows that it is play and that you are
conducting the interaction with respect and good faith.
• Do not do pro-vocation with ill-thought, or if you believe that the person may believe that you are doing it with ill thought. This is not encouraging participation.

Has this article pro-vocated you?

Sheridan Forster

sit down and have a chat

2008-11-05T15:25:00.003+11:00

In the process of recruiting for my research, I have been popping into more residential services. Everywhere I go the first thing I notice is if the main living area has height adjustable stools or not. I am a huge fan of the height adjustable stool. If you see height adjustable stools, you see people sitting down with people with PIMD. If you don't see stools you don't see people sitting down with people as much.

I love height adjustable stools (ones that have a small round seat and a gaslift) because:

- you can move them in really close to a wheelchair and if you a bit flexible you can move your legs around the wheelchair too and get your face nice and close to people who need it

- you can get the height right (although yesterday I was interacting with somebody who was very small, in a very small wheelchair, and in order to get my face under hers I jsut had to resort to the floor)

- the stools are brilliant for helping people with eating, reducing the twisting, turning, reaching, and stimulate optimum chin position in the person you are assisting because they don't need to look up at you

- they can move easily in or out when interacting with people (which can be very useful with people with startle reflexes)

Things to think about when you are looking at stools.

- look at the range of height (some don't go down far enough to get your head level with the person you are interacting with)

- look out for the broadness so you can get in close

- look out for foot rests (these can make it harder to get in close)

- look out for smoothness of movement - you want them to move around easily so you can get to where you need to and you can push them aside when not needed.

In the photo you can see Leendert and Afke, two great people I met in Noordenhaven, an institution in the Netherlands. Stools were available everywhere so staff could sit down and spend time with people.

Transition to adulthood

2008-10-05T17:28:00.003+11:00

One of my favourite presentations at IASSID was by Krysti DeZonia, from the USA. Krysti presented her doctorate work looking at school to adult transition for people with PIMD. She asked parents and teachers, separately, how they conceptualised the person's adult life. She also looked at the relationship between various expectations and the sort of reports people write.
Many of the parents and teachers thought that adult life was going to be sad, lonely, and hard, with a fear of students being warehoused, underchallenged, and unable to find appropriate supports. Parents' priorities were for the person to have personal fulfilment, be with people who love them, and be part of life, not an observer. Whereas teachers were more about getting into services, and their in-class goals reflected laws and artifacts governing education. Given this different priorities the expressed goals in plans often did not match.
In her thesis, Krysti notes parents thoughts around the preferred activities of their transitioning child: "These varied depending on the child, but all children had activities that the parents believed bring them pleasure, and parents were not concerned about how functional or age appropriate these activities are" (p. 80).
This research has implications for families, educators, and for adult services. I work one day a week for adult services, and reading the despondency expressed by these parents and educators (although in USA), effected me. Firstly, are services giving the message to schools that all is not dark and horrible upon finishing school? Secondly, are services delivering on what people really want? In Krysti's study parents "simply discussed their desire that their child has a place in the world where he is respected, happy, and loved". Where are these priorities sitting in service provision?
I would love to see a study similar to this conducted in Australia looking at adults with PIMD in services.

PIMD IASSID Cape Town

2008-09-14T17:21:00.004+10:00

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

PMLD Response to Valuing People Now

2008-08-17T12:55:00.004+10:00

The focus of PIMDA is what is happening in Australia. One of my key concerns is the lack of a cohesive body and a cohesive message for lobbying for people with PIMD in Australia.
In my reading this morning I revisited the report written in the UK by the PMLD Network in response to Valuing People Now. Valuing People is the government’s guiding document for services to people with intellectual disabilities in England and Wales. The PMLD Network submitted their concerns to the government in response to Valuing People Now outlining the particular considerations needed for making the vision a reality for people with profound intellectual and multiple disabilities. They were explicit in outlining the current situation and what needs to happen.
I strongly recommend looking at this report (http://www.mencap.org.uk/displaypagedoc.asp?id=2396) . I will however highlight some of the themes and calls for actions.

Including Everyone
- Understanding numbers and needs of people with PMLD
- Representations on boards and forums
- Recognition and standards response to health needs
Personalisation
- Real access to individual budgets of realistic cost amounts
- Priority for person centred planning
What people do
- Access to meaningful activities (not necessarily work)
- Day service access availability unless good alternatives are in place
- Skilled staff
- Planned, monitored and evaluated services with people with PIMD in mind
Better health
- Workforce able to address complex health needs
- Specialist expertise when needed
- Annual health checks and health action plans
- “Health care finance”
Housing
- Choice and control about where to live
- Trained staff in places where people want to live
- More funding for high quality, safe and supported housing
Advocacy and rights
- More advocacy for people with PMLD
- Representation and involvement in policy-making
Partnership with families
- Recognition of importance of family carers
- Access to good quality short breaks
People as local citizens
- Same rights recognition
- People being valued for who they are, beyond being “cared for”
Transitions
- Good quality transitions
Improving workforce
- Skilled sustainable workforce
- Trained staff for health, communication, and behaviour needs
- Pay reflecting additional skills of staff

UK PMLD

2008-08-10T14:24:00.002+10:00

I have often been inspired by the actions occuring in the UK. In the UK the term PMLD (Profound and Multiple Learning Disability) is used. I frequently look to the UK when I want to learn more about a topic, get advice, or see lobbying actions. Here are a few great links in the UK:
- http://www.pmldnetwork.org/ (this is a brilliant website)
- http://www.dundee.ac.uk/pamis/
- http://www.mencap.org.uk/pmld
- http://www2.northampton.ac.uk/education/home1/cesner/pmld-link

Honouring a friend

2008-07-29T17:13:00.002+10:00

I was thinking about a friend of mine. His name was Nim. Nim and I used to have fun together. We would have the best "da da" conversations: I'm not talking high art here, I'm talking literally we would say "da da" to each other. These were most fun in van where we could be as loud as we liked. Sometimes we'd go down to the market on the weekends. We'd roll up and down the market and I'd watch Nim smell the coffee. Sometimes we'd stop in at a stall and Nim would have a bit of a back massage. I'd watch his face screw up with the tension then suddenly release as the knot uncoiled. Then we'd go over to the grass and unhindered by OH&S I'd lift him out of his wheelchair and we'd lay around on the grass looking at the sky through the trees, playing our strange version of arm wrestles.
Nim died seven years ago. He taught me many things, but one of the things he taught me was about death; that when somebody dies part of what we miss is the person, and another part we miss is part of ourselves, who we were when we were with that person, because we can never be the same person again.
I can close my eyes and see Nim's face and the crazy way his red hair rolled in furrows on his head particularly when he'd just had a number 2. I can close my eyes and almost feel our "da da" times together.

Friendship

2008-07-20T16:32:00.000+10:00

Services in Australia all tend to subscribe to the philosophy of inclusion. An implied part of inclusion is friendship and other sorts of social networks. But how has concepts of friendship been applied to people with PIMD? What does friendship mean when thinking about people with PIMD: what does it mean to the person with a disability, what does it mean to the friend, and what does it mean for support services?
My best friend, Keith McVilly (who also happened to have looked at friendships of people with mild-moderate ID for his PhD) and I discussed this today. I think it is worthwhile to start with my own bias. I have friends who have PIMD. I have also battled with services to allow me to exercise my friendships, experiencing the red tape and the reluctance of some services to go into “risky territory”. I think we have a long way to go to understand how inclusion is to occur for people with PIMD in environments that are risk aversive.
Here are some thoughts that came from Keith and me. Mainstream friendship is usually conceptualised as a relationship of mutual respect with equality and reciprocity. Within this relationship each person takes on different roles at different times. What people get out of friendship is difficult to encapsulate; perhaps it is a sort of spiritual connectedness. But what happens for a person with PIMD whose ability to take on different roles in the relationship is severely compromised? Is this still a friendship if they can never initiate the contact with the “friend”. One way of looking at friendship with people with PIMD is to look at it from the view of the friend and in this case friendship seems to comprise of the following thoughts: (1) “I think this person likes being with me”, (2) “I get something out of being with this person”, and (3) “I see this person as a valuable human being”. This way of viewing a friendship is not without its problems as the person with the disability cannot directly confirm or negate the statements. In some ways it is like the dyad where one person thinks the other person is their friend, but the other person doesn’t like them at all.
I certainly have no easy answers when it comes to friendship with people with PIMD. However, I do know that spouting the importance of inclusion without even thinking of what the relationships might mean to both potential partners, and not considering the, shall I say, logistics of relationships, is doing people a disservice. For example, what does an organisation do if somebody wants to take a service user with PIMD out for dinner (do they ask the friend to get a police check, ensure that a staff member accompanies the person, say it is too risky and hope the friend goes away and doesn’t stir the pot, or do they just let the person take the house van, give the person their medication, and sweep them up with wine and spaghetti). What would different friendships look like if the person had particular care needs such as PEG feeds, needs to get out of their chair, and assistance in the bathroom? Would it mean that past staff members who are familiar with the attendant care needs would be people who would best able to spend time with the person? Or must friends only be people who don’t have disabilities, and haven’t worked with the person... Furthermore are we putting people at risk by letting them be with people who are not under the jurisdiction of our organisational policies and practices?
Clearly there are many things that need to be thought about if we are to really work towards (not just talk about) the inclusion of people with PIMD.
ps: for some research looking at friendship in the community after living in an institution, see: Bigby, C. (2008). Known well by no-one: Trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community. Journal of Intellectual & Developmental Disability, 32, 148-157.

Non-Instructed Advocacy: Advocacy for People with PIMD

2008-07-13T15:31:00.004+10:00

In Australia we often hear about self-advocacy in the context of people with disabilities standing up for their rights, and at times having support to ensure their voices are heard, but what happens when somebody does not have a voice? Advocacy systems often rely on an individual saying "I want an advocate to stand beside me on this issue". This directive may not be able to be made by people with PIMD. Sometimes it may be difficult to know even what a person's perspective on an issue is. Does this mean they do not "qualify" for advocacy?
In the UK, becoming increasingly popular is the concept of "non-instructed advocacy". The Oxfordshire Advocacy Development Group state that "Non-instructed advocacy is a form of advocacy that sets out to support those people who are not able to instruct an advocate or to say what they want for reasons of communication difficulties, lack of comprehension, severe learning disability or dementia" http://www.oadg.org.uk/noninstructed.asp. Rather than a person saying what they want, non-instructed advocacy relies on observation and knowing the person rather than being told. This presents a challenge to common forms of advocacy. It requires really getting to know a person over time, and then knowing how to represent the person without bringing in your own views or agenda, without clear confirmation from the person being represented.
Non-instructed advocacy is not simple, and controversy is attached to it. Lawton (2006) states that "some people argue that this cannot be true advocacy as the person has not asked for this support and this might be one reason for people with high support needs missing out" (p.14). People with PIMD are missing out on advocacy. The voice a person saying "I want to make a complaint" is listened to much more readily than somebody who's body language is saying "I am not happy with this". Are people with PIMD not to be listened to because they don't have a voice?
What is happening around Australia for people with PIMD in the area of advocacy? One example that I can think of is a small organisation whose Board of Management is made up by each resident and their voluntary advocates. The advocates have long-term relationships with these people, and on the Board of the organisation represent both themselves and the resident. Does anybody else know of initiatives that enable advocacy for people with PIMD?
There are few resources around on non-instructed advocacy that I have been able to find. One resource is Lawton, A. (2006). A voice of their own: A toolbox of ideas and information for non-instructed advocacy. Kidderminster: BILD. I claim no expertise in advocacy and would love to know more, particularly if this may be an avenue for improving the lives of people with PIMD.

Say N/A to N/A (except in menstrual management for men!)

2008-07-06T14:17:00.000+10:00

One of the first changes that I set about in one of my workplaces was to get rid of N/A (not assessable) from profiles on people with PIMD. Often I would see reports strewn with “vision: N/A”, “hearing: N/A”, “cognition: N/A”, and “communication: N/A” or worse “communication: nonverbal” (problems with the term nonverbal will be explored another day). All of these areas are assessable and provision of quality services necessitate an understanding of the areas. How can a service say that they are working on providing a service to enhance a person’s quality of life if they do not know answers to these fundamental questions that shape the way a person experiences the world around them?
“Professional” assessment can be very useful for answering these questions but it is not an essential starting point. Not having a professional assessment is not a reasonable excuse for not having basic knowledge about a person. Take vision for example. Anybody can do a very basic vision assessment – we do them every time we meet a person. Does the person make eye contact with you when you are standing two metres away, or only when your face is 30 cm from their’s? Does the person’s eyes follow objects in space, and do they use their eyes to locate objects before grabbing them? Do they recognise photos? In some cases the results may be “the person does not make eye contact or look at objects and further information is needed to know if they can distinguish between light and dark”. “Blind” is also not a sufficient descriptor as the majority of people labelled as blind do have some vision and our responsibility is then to know how to use the vision that they have. Similar everyday functional observations can be made for hearing, cognition, and communication (people very rarely have no hearing, no cognition, and no communication). It is our responsibility to understand the people that we propose to support. It is our responsibility to ensure that people can use the skills they have, however limited the skills may be.
The only acceptable area for N/A is in menstrual management for men!

Writing about a person with PIMD or “all about me”...

2008-06-29T18:24:00.001+10:00

Over the past 12 months I have been involved in several conversations regarding the use of first-person in writing. Writing in first person means using the term “I” to refer to the author, for example “I like folk music”, as opposed to third-person “Sheridan likes folk music”. In writing about people with PIMD, writers may be faced with the dilemma of, do I write in first-person or third?
For people with PIMD it may be clear that the person themselves has not “written” the document, however the writer may choose to write the document as if the person was saying it themselves. There is a belief that writing in this way may get the reader to “listen” more to the document and see the person as a person with views and perspectives. This practice is very common in adult disability services. There are many reasons, however, to be extremely cautious about using first-person.
Does “pretending” that the person wrote information further disempower the person? What if what has been written is not in fact true (e.g. “I hate folk music”)? What if what is written about the person may be encouraging responses which deny the person’s rights (e.g. “When I suck my finger, hold my hand down in my lap”)?
Issues of first-person use have been explored by Michael Smull and others involved in person centred planning (thanks to everyone on www.elpnet.net that helped me to navigate this information). Smull and Sanderson wrote that “one of the abuses of person centered planning that can be found with distressing frequency is to change traditional plans from third person to first person and call the result a person centered plan” (see http://www.virtualward.org.uk/silo/files/think-before-you-planpdf.pdf). Smull discourages the use of first-person language unless the person has clearly been involved in what has been written – this means that they have said it using symbolic forms and they have confirmed it on review of the document (he also recommends testing out the ongoing truth of the statement). If first-person is used because the person has expressed it, he recommends that facilitators are very mindful that they haven’t used leading questions to generate the quotes. He suggests that if the writer and all people who know the person are not 100% sure that this is something that the person would say if they could, then using third person is recommended.
I think this is very sound approach. What do you think and how does this reflect practice in your organisation?

What is a profound intellectual and multiple disability?

2008-06-22T11:25:00.001+10:00

Finding a definition of profound intellectual disability is by no means easy. In some places, people with PID are people who have an IQ of 20 and under, however, establishing that somebody has this level of intellectual functioning is very difficult. So essentially this definition is not terribly functional in practice because there are few tests that can discriminate this level of ability, in particular when you also throw in physical and sensory impairments as well. Some researchers have chosen an cognitive age equivalency to determine if somebody has a profound ID. These cognitive age equivalencies have varied across researchers and nations with some people reporting it as under 12mths, 24mths, or IDC-10 reporting 3 year equivalence (I am aware of some of the pros and cons of using age equivalency but shant go into it now).
The definition that I find best at the moment is the one by PMLD Network in the UK (in the UK an intellectual disability is called a learning disability):

Children and adults with profound and multiple learning disabilities have more than one disability, the most significant of which is a profound learning disability. All people who have profound and multiple learning disabilities will have great difficulty communicating. Many people will have additional sensory or physical disabilities, complex health needs or mental health difficulties. The combination of these needs and/or the lack of the right support may also affect behaviour.

This definition, though giving a clearer idea of the population, still does not say what it means to have a profound intellectual disability. Having a profound ID means that it is difficult for the person to learn new things. It means it is extremely difficult for them to concentrate, plan, problem solve, and remember. It does not mean that a person can not do these things, but it may take much much longer, and the person may need very different teaching techniques. Sometimes the focus for people with PIMD may not be on trying to teach them a new skill, but on how the people around them support them to do things in a different way (i.e. compensating for the skill deficit). It means that people around the person with a PIMD need to think about different ways that they will share meaning with person. Meaning may not be carried through words, instead meaning may come through actions and experiences.

The "multiple" part of the definition means that the person, in addition to their cognitive impairments, may have physical, sensory, and other health issues. Researchers have reported that the more severe an intellectual disability a person has, the more likely they are to have hearing, vision, physical and health issues such as epilepsy or gastrointestinal issues.

However, despite the cognitive and other difficulties that a person with PIMD has, they are still a person, a family member, a consumer, a friend, and a valuable human being.

Why set up the PIMDA weblog?

2008-06-22T11:09:00.001+10:00

You may be wondering why I have set up PIMDA. There are two key reasons for setting up PIMDA. The first is to find out what are issues to / for people with PIMD in Australia. At the moment it seems like individuals have issues, however the capacity for responding to issues as a collective are limited. I do not know any agencies that respond in particular to the needs to people with profound intellectual disability. If there are let me know.
The second reason for setting up PIMDA was to strengthen the networks of people interested in improving the lives of people with a disability. There are many individuals out there working towards this goal - do we know who they are? Sometimes we may know people from a particular discipline or content area (e.g. knowing the people from the "communication" discipline) but not know people from the other disciplines that can complement working forward (e.g. knowing who is leading the way in terms of advocacy for people with PIMD).

Why PIMD?

2008-06-18T17:06:00.000+10:00

Some of you may be thinking isn't it wrong to label people? I believe that in order to improve the lives of people with the most severe disabilities it is important to develop an identity. An identity acknowledges that everybody is different (i.e. heterogenous) yet there are groups that share similar characteristics and issue areas. Identity development has played a role in fighting against discrimination for many groups of people, such as woman, gay people, and aboriginals (see Ian Parsons' Cripples, Coons, Fags and Fems for further discussion of identity).
I have chosen to use the identity term "profound intellectual and multiple disabilities" or PIMD. I believe that it is most accurate in clearly describing this group of people: people who have profound intellectual disability alongside other disabilities such as physical, sensory, and health issues. PIMD is also the term used by IASSID and has international saliancy. In the UK the term PMLD (profound and multiple learning disabilities) is used in line with their use of "learning disabilities" instead of "intellectual". Terms such as high support needs or complex needs, cover a broader group and are easily confused. Similarly just using the term severe disability does not capture the specific degree of cognitive impairment experienced by people with PIMD.
Acknowledging that someone has a PIMD is not a values statement; it is a statement that recognises that the person experiences the world in a different way from most people and requires the people around them to adapt the way that they are so that they can share meaning with that person.