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

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

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

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

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

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

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

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

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!)

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!