BIts and bobs

It's been awhile since I've written, but it doesn't mean I've not been busy.
I've been focusing my attentions elsewhere. I've been fortunate to be part of a Facebook called SPIDA: Severe and profound intellectual disability Australia. It's been a great community for discussion and hopefully further future lobbying.
I've been busy promoting Video Interaction Guidance, a technique that I think is invaluable in supporting people with PIMD.
Have been to a number of conferences and events including Intensive Interaction conference, Young people with complex care needs, Scope's Communicate Participate Enjoy, and ASID NZ.
Also keeping my toes in the research with doing lots of journal article reviews, beavering away on my own articles, and keeping abreast of new issues. I've been fortunate to have a chapter in an upcoming book on Video Enhanced Reflective Practice (in line with Video Interaction Guidance) and Medical Care of People with Developmental Disabilities.
Also been increasing my private practice work, and loving being with people with disabilities again, after two many years in an office.
I'm also thinking of folding this blog and moving it just to my own private practice blog. I guess I started the blog a number of years ago in hope to further develop a community of interest around people with PIMD. I don't think the blog has really achieved that goal; perhaps in a very small way. I guess I still dream of a day when Australia does have an association/strong group of researchers/practitioners/parents/providers who can raise the voice of people with PIMD.

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. 

Changing Places Victoria - A great success

I had the pleasure of attending the Changing Places Victoria launch on Monday. It was very exciting to see a great number of people attending the launch and passionate about getting Changing Places happening here.
It was great to check out the mobile Changing Places loo and see how popular this has been for councils. It was also great to hear about the upcoming bathrooms for Ringwood.

Let's hope that, like UK, in 5 years time we'll be able to announce the many hundreds of places where people with disabilities can go to because they now have access to an adult height adjustable change table, hoist and real space for assistance.

Intensive Interaction course at Deakin Uni

Cross posting for Mark

barber.mark.m@edumail.vic.gov.au


Dear colleague, the accredited Masters Level Unit of Study: Intensive Interaction: Theory to Practice is available again in 2013, at Deakin University Burwood Campus

Intensive Interaction is an approach to supporting the communication of learners with complex intellectual disabilities and often severe communication impairments which originated in UK and has been gaining increasing interest in Australia since its introduction in 2003.

The approach is recognised an evidence based practice by APS

WHERE :
Deakin University, Burwood Campus.
HOW:
Participants complete the required readings prepared for this unit. Tutorial support is provided by email.
The unit follows 3 phases of on-campus days at Burwood Site, through the trimester with face-to-face teaching by the unit lecturer

·      Phase 1.....3 consecutive days in January

·      Phase 2......a weekend in March

·      Phase 3.....3 days in April

NB To gain accreditation for learning, participants should attend all 8 days and complete 1x 3000 word assignment and 1x 3000 word reflective diary.

WHEN : Begins January 2013
WHO : anyone who works with people with complex or profound intellectual disabilities

Contact Anne Savige Manager of Educational Projects anne.savige@deakin.edu.au+61 3 924 46384


NB More detail is available in the attachment
regards

Mark
Mark Barber PhD
Intensive Interation Coordinator
Bayside SDS
Genoa Street
Moorabbin
Vic 3189

The Lost Generation

It was great to be reminded the other day of The Lost Generation project by DADAA, and even more exciting to be pointed to them on the Disseminate website.
In 2008 I first heard about the project. The project involved films of people with disabilities in WA, Storytellers. I remember as a room full of professionals discussed a film of a man sitting in the sand running his fingers and making patterns. Some proposed that it should be called sand sculpting. Some questioned the value of showing a man "in his own world". How should this man be presented to this world?
You can catch a brief glimsp of David in Episode 4 of the Findings documentary.
The whole project is worth a look!

Changing Places in Victoria EXCITING!

Shared post from Jack Mulholland

Hello on Monday November 26 at the Karralyka Centre in Ringwood we are launching a project that will have a huge significance in the social inclusion of people with a profound or severe disability as a result of an increase of public and private buildings that contain an accessible toilet that has been purposely designed for their requirements.  

The Changing Places project will pilot in Victoria with the aspiration to go Nationally in the future.   This project is based on world's best practice and that is a highly successful UK web based campaign (Changing Places) that commenced in 2006.   

Changing Places is a accessible toilet that contains a ceiling hoist and adjustable adult change table.  In regards to bathroom needs, these facilities are required for people with a profound or severe disability, without these facilities the person with a disability and their carer face the following options 

• to go home
• to sit in wet continence pads
• to change on the floor of an accessible toilet

Under under currents standards 1428.1 the minimum requirements for a disabled toilet facility does not require a ceiling hoist or adult change table and therefore we find very few accessible toilets with a ceiling hoist and change table available.  Since the UK commenced the Changing Places campaign in 2006, there are now over 400 Changing Place facilities available across the UK in public places such as shopping centres, train stations, airports, entertainment venues.

This invitation only event will run from 12.15pm to 3pm and will include lunch.   

If you were wanting us to invite a fellow colleague, please email me their contact details asap. 

A formal invitation will be sent to you in the near future outlining the details of the event.  


Regards

Jack 
Mulholland 
MetroAccess Officer

Maroondah City Council  |  Braeside Ave Ringwood
9294 5750  |  0418 381 154 
jack.mulholland@maroondah.vic.gov.au 
www.maroondah.vic.gov.au 
www.strokeachord.com 
www.maroondah.vic.gov.au/CBP.aspx

'Stuck at Home' report from Mencap

This was also in the latest edition of PMLD LINK.

Mencap report reveals that 1 in 4 adults with a learning disability are stuck at home due to cuts to day services

This report highlights the number of people in the UK who now don't access any day service. The blurb highlights funding cuts to be a reason for day services closing. But I can't help wondering if the systematic devaluing of the services and the agenda for individualisation has also resulted in people getting lost in the cracks?
I must read the whole report.

Palliative care

I just received the latest issue of PMLD LINK from the UK.
Some of you may be familiar with Victoria, who features in Jim Mansell's Raising Our Sights video. In the latest PMLD LINK edition there is a great article by her mum, Jean Willson. The article focuses on realizing the value of engaging with a palliative care plan for Victoria as she becomes more frail. The article is positive, focusing on how to make the best out of Victoria's every day. Thank you Jean and Victoria for sharing Victoria's journey.

Last week I had the pleasure to go to the International Society for the Scientific Study of Intellectual Disabilities World Congress in Halifax, Nova Scotia. I presented on my PhD work on affect attunement, on my current HOP study, and work exploring culture and practices supporting adults with PIMD in Japan. Here are my top ten favourite papers at the conference (in no particular order): Eric Weber - Living as an adult with PIMD – The right place to live: necessarily in a family?. Bea Maes & Carla Vlaskamp - Methodological challenges in building evidence based interventions for persons with profound intellectual and multiple disabilities. Krysti deZonia – Public perceptions of profound disability. Bea Maes - Palliative care for persons with profound intellectual and multiple disabilities. Pauline Heslop - Can a Confidential Inquiry into a person’s death make a difference? Miriam Roemer - Perception of persons with profound intellectual and multiple disabilities. Nicola Grove – Patterns of co-narration in a personal story interaction. Kaisa Martikainen and Katja Burakoff – OIVA interaction model: Supporting staff to better interaction with people with PIMD. Genevieve Petitpierre – IEP goals and objectives of adults with profound intellectual and multiple disabilities. Nan-chieh Chen – The telling body: Ethics, ethical skills and applications of caregivers faced with persons with PIMD. Sui Sone – Living situation of adults with severe motor and intellectual disabilities (SMID) in Japan. Hilary Johnson – Social communication and for adults who communicate at a symbolic but nonlinguistic level

It's been a while since I've been on. See below request from Andrew in England who is writing a book on young adults with PIMD and would like input from other countries... "Andrew Colley" wrote: Hello, I am currently doing some research into educational provision for young people with profound and multiple learning difficulties (PMLD) in the US, Canada and Australia. If there is anyone out there who can help with info about Australia and would be interested in filling in a short questionnaire, please get in touch. Many thanks Andrew Colley Edith Borthwick Special School, Bocking, Braintree, Essex, UK.