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!

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

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 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 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?

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?

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).