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

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

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

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

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

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

Upcoming PIMD conference in Victoria

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

Organisations that might be relevant to supporters of people with PIMD

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

Raising Our Sights - video

After several months of waiting, the UK Raising Our Sights video that accompanies the report is now on the Department of Health website. It has been segmented into parts, for download size purposes I assume. I recommend watching all parts - but if you have to choose, I would recommend starting with Victoria and Mitchell's video (Alex and Simon perhaps are more in-line with having severe ID rather than profound - but nevertheless it is a good video).
I think this an important example of supporting adults with PIMD and it may be helpful to both services and families supporting people with PIMD.
Click here for both the report and the videos.

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

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

Changing Places in Australia!!

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

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

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

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

ECAPSS

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

PIMD in Australia in PMLD LINK UK

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

All go in Rome

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Symposium 13: Interventions
Moderator: Krystie DeZonia

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

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

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

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

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