Do you know what they see?

I suspect that a huge number of the adults with PIMD that I meet have undiagnosed cortical vision impairment. The compromised understanding of what the person can see, and the strategies that could optimise their use of existing skills, has an impact on quality of life.

I watched a great 30 webinar on CVI today, and I'd encourage everyone supporting adults with PIMD to watch it. Substitute the word child for adult - I don't know what evidence there is for improving functional vision in adults, but I do know that understanding impairments can help a person optimally use the skills that they do have.

http://www.perkins.org/resources/webcasts/cvi-and-the-evaluation-of-functional-vision.html?utm_campaign=cvi%20and%20the%20evaluation%20of%20functional%20vision&utm_source=webcast%20announcement&utm_medium=email

Pimda conversations reaching the UK

I few of the PIMDA articles were recently reproduced in PMLD-LINK magazine. http://www.pmldlink.org.uk

This is a great UK magazine that focuses on people with profound intellectual and multiple disabilities. It contains articles, resources, training... Always thought provoking.

Intensive Interaction Down Under conference next year

For people interested in Interaction with people with PIMD, check out the 2014 Intensive Interaction conference http://www.ammp.com.au/iid3/

Bigger is better bias: or the knee jerk reaction

Picture this, I tell someone I like folk music. Their response, instead of saying "really", or "what type?"  or something like that, is to say "maybe you could be part of the band". I use this analogy to introduce the frequent responses that I hear when we say something that a person with PIMD can do. Can you guess what they might be?...

Sometimes it might be... "How could we turn that into a functional skill". Sometimes it might be "how could we get them into the community"

Now don't get me wrong. I don't have a problem with the community or functional skills. What I do have a problem with is when those lines are given so immediately without first really valuing what the person is already doing. It's almost as though what people are already doing is second best to the prospect of doing it as a functional skill or in the community.

Is bigger always better? Is the potential functional skill always better? Is doing it in the community always better? 

Perhaps what I talked about in my age appropriateness article fits here too. Are these things operating as enablers or barriers in people's lives? I think if the question is based on an inherent devaluing of what the person is currently doing, and there will be significant challenges in the person acquiring the proposed   next step, then I do think they can be barriers: the person is left in a situation that many people see as second best and devalued (youll only be valued when your skill is functional or community based). But, if the current non functional and non community based skill is first truly valued and then the other thing is opened as an opportunity, then they can be enablers.

So next time I say I like folk music first understand why and what I like about it, not with the agenda of then modifying me to be more functional or community based. Then, after you truly understand my like you can propose making it more functional or community based.

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.

Raising Our Sights: Practice Guides

The Practice Guides for Raising Our Sights are out. Check them out on the Mencap website.

http://www.mencap.org.uk/all-about-learning-disability/information-professionals/pmld/raising-our-sights-guides

There are links to the guides and videos linked onto YouTube.

I'm just watching the Clinical Procedures video and it's great.

Well done!

Dr Jan van Dijk coming to Melbourne

http://enews.threeware.com.au/subscribers/view_online/0_3647/1668566/M1J8E5wsqFDz9veWAh28JIS9ounouey8

I am a huge fan of Van Dijk's work - and hoping he'll touch on adults in his session in Melbourne as well.

His work relates to one of my biggest annoyances - when therapists leap into object symbols programmes without attending to the areas of resonance, attachments and co-active movement (going back to the origins of the work).

See you there maybe!

Children’s commissioner: Rules on touching ‘wrong’ - Scotland - Scotsman.com

This was front page of the Sunday Scotsman newspaper. Very interesting article calling to reexamine the touch aversive environment of children's environments.
Do we need the a similar reconsideration in the support systems of adults with PIMD?
Children’s commissioner: Rules on touching ‘wrong’ - Scotland - Scotsman.com

Raising Our Sights UK ... next steps

I was really excited to hear that the UK PMLD Network and Mencap have produced how to guides and films in follow up to Jim Mansell's Raising Our Sights report. These will be launched in the UK later this month. 

I've requested a copy and will let you all know when I receive it. I wonder if they'll have the available online too?

For more info go to http://www.mencap.org.uk/pmld-network-conference-2013

From the website

Doll therapy in aged care

Just read this on the Spark of Life website. It resonated with me as something that might relate to some people with PIMD.

If you support the use of doll therapy, you are likely to have had positive, personal experience that dolls have strong symbolic meaning and provide purpose, nurture and healing for people with dementia. As a result you are most likely passionate about these outcomes and will fight for Doll Therapy to be an integral part of the therapy program.

On the opposite side, you may have thoughts such as: I'd rather die than imagine myself as an old person in a nursing home, walking around with a doll. You are genuinely concerned that introducing dolls can be childish, demeaning, maybe even patronising and often feel so strongly about your point of view that you ensure dolls are not permitted in your facility.

If you belong to this side, undoubtedly, you genuinely want the best for people with dementia and respect and dignity are high on your agenda. The way you assess whether Doll Therapy is acceptable or not is based on the thinking: Do unto others as you would like done unto you. This is a perfectly logical and rational conclusion.

This same logical, rational thinking is still active in most people in the early stages of dementia. However there is a distinct difference in the way a person who has moved beyond the early stages of dementia thinks. T his person may now have lost much of their memory and their logical, rational thinking as well as their social inhibitions. The beliefs and values they used to uphold are no longer important to them. They live in the moment - and that is all that matters!

When you care for a person in the later stages of dementia, it can serve you both well to consider a change of thinking from: How will the person respond to this activity? To: What activity will this person respond to?

http://www.dementiacareaustralia.com/index.php?option=com_content&task=view&id=60&Itemid=81

Great new film online

I just found out about a really great film that is available online.
Here's info about it...
http://www.youtube.com/watch?v=Hp4PW17U_h8
"If you listen, you will hear us"

A Leicestershire-produced DVD and guidelines aimed at involving people with profound and multiple learning disabilities (PMLD) in the planning and commissioning of services that they use has been launched.

'If You Listen, You Will Hear Us' project gives a voice to all people with PMLD. It has been produced by the Leicester and Leicestershire Learning Disability Partnership Boards along with frontline staff, carers and people with learning disabilities themselves.