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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

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.

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!

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):