DVD cover Understanding Suraj
DVD cover

I was excited to see this snippet today called Understanding Suraj (read about it in the most recent UK Intensive Interaction Newsletter). I will definitely by buying the whole DVD. What do you think of it, how did it make you feel?

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

Involve Me


Great new resource from Mencap in UK. A beautiful multimedia package. Check out the website at http://www.mencap.org.uk/involveMe.
The Involve Me resource aims to increase the involvement of people with profound and multiple learning disabilities (PMLD) in decision making and consultation. The resource is the result of a three year project, supported by the Renton Foundation and run by Mencap in partnership with the British Institute of Learning Disabilities (BILD).

People with PMLD and staff took part by learning about and using different approaches to communication: sharing stories, creative communication, peer advocacy and multimedia advocacy.
I also requested the DVD and got my hot little hands on it yesterday. If you do get hold of it check out the Robbie video. It’s a great video of a man who enjoys throwing a spoon and this is valued by staff rather than seen as a problematic behaviour – I love it. One day when I get time I’d love to do something on the valuing of idiosyncratic skills!

New report: UK


From the PMLD Network listserve:
Dear All,

The report on “Communication and people with the most complex needs: What works and why this is essential,” which Sue Caton and I started last year, is now finished. The final report is available at

http://www.mencap.org.uk/document.asp?id=20568 for the main report and

http://www.mencap.org.uk/document.asp?id=20570 for the Easy Read version.

Sue and I would like to thank, most sincerely, all the members of this forum who contributed to the report. Your input was really appreciated, and we hope you like the final version.

Best wishes
Juliet Goldbart & Sue Caton, MMU j.goldbart@mmu.ac.uk

I’ve had a flick through the report and I think it is excellent. It will be of interest to speech pathologists, teachers, service providers, and families. I think it also provides a a good template for other interventions (e.g., physio, OT, music therapy). I must say I’m also well chuffed to see HOP in there (a commitment to give a person 10 minutes of 1:1 time).

Raising Our Sights – video

After several months of waiting, the UK Raising Our Sights video that accompanies the report is now on the Department of Health website. It has been segmented into parts, for download size purposes I assume. I recommend watching all parts – but if you have to choose, I would recommend starting with Victoria and Mitchell’s video (Alex and Simon perhaps are more in-line with having severe ID rather than profound – but nevertheless it is a good video).
I think this an important example of supporting adults with PIMD and it may be helpful to both services and families supporting people with PIMD.
Click here for both the report and the videos.

upcoming event – Raising Our Sights

Cross posting this event that might be of interest (related to below mentioned report)
Raising our sights: services for adults with profound intellectual and multiple disabilities
Professor Jim Mansell
Friday 16 April 2.00pm – 5.00pm
Presented by Professor Jim Mansell, Director of the Tizard Centre, University of Kent
Implementation of new government policy for people with intellectual disabilities in England (‘Valuing People’) after 2001 has not made sufficient progress for people with more complex needs. A revision of the policy has identified this (‘making it happen for everyone’) as a goal. One of the groups identified as not receiving better services quickly enough are adults with profound intellectual and multiple disabilities. This master class describes the results of a review of services for adults with profound intellectual and multiple disabilities and its recommendations for action. Participants in the master class will have the opportunity to assess Victorian policy and practice in the light of the issues identified.
Enquiries to Professor Christine Bigby, C.Bigby@latrobe.edu.au – bookings essential

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