Understanding Suraj – An invaluable resource for anyone supporting someone with profound intellectual and multiple disabilities (and others)

That person that I’m working with, I’ve got as much to learn from them as they have from anybody else around them. And I want to be open to that. And I don’t want their life to be a wasted life; that’s the other thing isn’t it. Somebody whose maybe going to live for 40 years and then die, and nobody managed to unlock that potential and nobody managed to get in there because that is just a wasted life. I don’t want that to happen, don’t have to have wasted lives do they. They’re human beings with just as much potential as anybody else, and that’s unlocking, let’s find out what’s in there. Let’s not let it be wasted; let’s learn from that person.  – Rebecca Leighton in Understand Suraj DVD.

I was so excited to receive my copy of Understanding Suraj: Uncovering the person behind multiple disabilities from NL Productions UK, and I wasn’t let down.

This is a 45 minute DVD presented in four parts, including a background of Suraj narrated by his father, an observation of Suraj, and unpacking the current approach to being with Suraj. The story is honest, showing the disturbing self-injurious behaviour that Suraj had used for years, and using the voices of support workers and therapists to talk how they now approached Suraj.

Some viewers may struggle with the various strong English accents of narrators in Understanding Suraj. While the DVD appears  to begin with subtitles, these don’t appear to continue (as far as I could see). While I’ve spent time with Graham Firth, one of the narrators, I did need to spend some time re-getting my ears around his northern accent. Similarly, just getting the quote above took me several minutes of re-listening to capture some of the phrases.

While the narrators discuss Intensive Interaction (Nind & Hewett http://www.intensiveinteraction.co.uk) as a framework underlying the communication approach with Suraj, it is not essential that you have background knowledge of the approach to follow the story. Following viewing the film, viewers may want to learn more about Intensive Interaction.

I recommend this DVD to anyone supporting people with profound intellectual and multiple disabilities, and particularly for those who may use self-injurious behaviours. I think this would be a great DVD for teams to watch and discuss. Some of the practices they see on the DVD may be the same as what they are already do, and some may be markedly different. It would be useful for teams to discuss whether they would consider using the methods with people they support, and unpack why they may or may not do things and the subsequent potential implications of these choices for them and the people they serve.

Speech pathologists and occupational therapists may also find Understanding Suraj an invaluable resource. It may challenge current practice or support ways of working. The DVD shows that dynamic interactions must be the centre communication supports (communication supports must go beyond personal communication dictionairies, chat books and object of reference).

I also think that this would be an excellent resource for staff at the NDIA – it gives such a rich picture of one individual, the experience of families and support workers, and the possibility of an improved life through working towards the best possible relationships between staff and the person they serve. These relationships need to be thought about, planned, informed and supported. Sometimes they occur naturally with amazing support workers. But too often, in line with Rebecca Leighton’s words (specialist speech and language therapist), the time is not given to unlock and spend the time to get to know the person in their full potential.

The DVD can be ordered through DL Productions UK – http://www.nlproductionsuk.co.uk/styled/DVD%20Understanding%20Suraj/. It is also available through Amazon UK, but this does not appear to be able to be shipped to Australia at the moment. A short intro the the video is also available on YouTube – http://youtu.be/inWvCsumQLk

Approaching Best Practice for adults with PIMD in day services

I had the pleasure of spending a day at WALCA in Bexley, NSW, last week.

There were many things about the service that make me suggest they are approaching best practice.
Most notable was their InterCom service in IGLO:). This part of the day service included two staff dedicated to supporting the communication of the service users. The staff had built particular expertise in Intensive Interaction and other communication strategies. They had an area of the day service where they could bring clients for one to one work. In addition, they had other staff spend a day in the part of the service so that they could model and share what they’d learnt. 
They showed and discussed a video that they had made of the work. They impressed me with their ability to describe the outcomes for service users and how these had been bought about: people who were now taking turns in sound play, people who had started the service screaming most of the day and now smiling in interactions… Very impressive, and showing the value of day services when time is dedicated to staff learning and nurturing their ability to bring about and describe outcomes.

New Resource: Listening to those rarely heard

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.



New report: UK

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).

Intensive Interaction in Australia

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

New book

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???

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?!?

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”
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