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!

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 www.elpnet.net 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 http://www.virtualward.org.uk/silo/files/think-before-you-planpdf.pdf). 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.