Intensive Interaction in Australia

Just realised I hadn't said much about Intensive Interaction in Australia. Mark Barber is doing an amazing job spearheading the development of it in schools in Australia. He and Karryn Bowen has released a new DVD illustrating the technique and some of the use in schools. Give Mark a buzz if you want to find out more about the regular training that he offers. This is a technique with accumulating evidence for how it helps children and adults with PIMD develop fundamental communication skills. http://drmarkbarber.co.uk

handy online resource accross issues

In 2001 Judith Samuel and Marie Pritchard from Oxfordshire UK wrote an article called the The Ignored Minority: Meeting the Needs of People with Profound Learning Disability, in which they outlined the development of a specialist service focusing on the needs of people with PIMD. Nearly ten years later I thought I'd look at where the service is at. It was great to see that they appear to be going strong and have published some of their tools online (e.g. pre hearing screening, continence audit, comfort assessment, and intensive interaction work). Very handy.http://www.oldt.nhs.uk/aboutus/ourservices/community/MDRTResourceCentre.aspx

Learning from mistakes abroad

Toward the end of last year Beverly Dawkins published the following article: Dawkins, B. (2009). Valuing Tom: will Valuing People Now change the lives of people with profound and multiple learning disabilities? Tizard Learning Disability Review, 14(4), 3-12.
It is a response to the UK Valuing People Now policy shift and its impact on people with PIMD in the UK. It highlights the many ways in which the current policy has let down people with PIMD:
- decreased access to day services
- poor planning
- continued discrimination in health context leading to uneccessary pain and, at times, death
- continued inadequate access to advocacy
- ...
New initiatives attempting to improve the lives of people with PIMD in the UK are highlighted: Emerson's demographic study, Mencap's various studies...
Although this is based in the UK, I believe this is highly relevent in the Australian context, both in terms of current and future issues.

Paradigms and pragmatics

I'm busily working on my thesis. Read this quote, which I thought was worth sharing.
“Although issues such as community-based supports, quality of life, and normalization remain equally important to nonambulatory persons with PMR [profound mental retardation], a failure to plan for their day-to-day needs can result in decreased access to appropriate health-care services, deterioration in functioning, and overreliance upon a group of poorly trained and isolate caregivers”
- Kobe, F. H., Mulick, J. A., Rash, T. A., & Martin, J. (1994). Nonambulatory persons with profound mental retardation: Physical, developmental, and behavioral characteristics. Research in Developmental Disabilities, 15(6), 413-423. doi: 10.1016/0891-4222(94)90026-4

The Argo Trust

At the recent ASSID conference in Hobart I had the pleasure of hearing about a great organisation called the Argo Trust. Dayna and Leigh talked about the history and culture of this single house organisation. The essential role of families in the establishment and ongoing success of the organisation was evident. I was particularly inspired with how the organisation appeared to stand up to funding bodies to say "no, that requirement is not meaningful and appropriate for us" and stand strong to have their voices heard. Images of the community of Argo provided evidence of respect, and the voices of staff and families caried love.
The service is in New Zealand. You can find out more throught their website www.argo.org.nz and blog http://argotrust.blogspot.com/

Deafblindness in people with PIMD

This article may be of interest
Fellinger, J., Holzinger, D., Dirmhirn, A., Dijk, J. v., & Goldberg, D. (2009). Failure to detect deaf-blindness in a population of people with intellectual disability. Journal of Intellectual Disability Research, 53(10), 874-881. doi: 10.1111/j.1365-2788.2009.01205.x

Abstract
Background Early identification of deaf-blindness is essential to ensure appropriate management. Previous studies indicate that deaf-blindness is often missed.We aim to discover the extent to which deaf-blindness in people with intellectual disability (ID) is undiagnosed.
Method A survey was made of the 253 residents of an institute offering residential and occupational facilities for people with IDs. Data are included for the 224 individuals who were able to complete both auditory and visual assessments. Otoacoustic emissions were used to screen for hearing impairment; those who did not pass were assessed by behavioural
audiometry. Visual acuity was assessed with one of the following: EH-Optotypes, LH-Optotypes,
Teller Acuity Cards, Cardiff Acuity Cards or the Stycar Ball Vision Test.
Results Prior to the study hearing impairment had been diagnosed in 12.5% of the 224 subjects, and visual impairment in 17%. Upon completion of the study these figures rose to 46% and 38.4% respectively. Deaf-blindness was diagnosed in 3.6% of the subjects before, and in 21.4% after, the study. Most (87.5%) of the deaf-blind individuals had profound ID.
Conclusion Deaf-blindness is most often not identified either by standard medical screening or by care staff. Individuals with this disability, however, require provision of special kinds of care. Four categories of deaf-blindness are proposed, according to the severity of sensory impairment in each modality. The tests used in this study are non-invasive and are appropriate for individuals with ID and children.
Early and periodic screening for visual and hearing impairment in individuals with ID is
recommended.

New Report from UK on Numbers of people with PMLD

Thanks Alex for forwarding me this report.
Eric Emerson has completed a report entitled "Estimating future numbers of adults with profound multiple learning disabilities in England" for the Centre for Disability Research at Lancaster University.
The brief report highlights an estimated sustained and growing number of adults with PMLD in England. He estimates that in the 'average' area in England with a population of 250,000, the number of adults with PMLD receiving support services will rise from 78 in 2009 to 105 in 2026.
I encourage you to read this report, which for me highlights the need for focus on people with PIMD, ensuring services that are appropriate for this group.
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_103201

Top Tips for Partnership Boards

http://www.pmldnetwork.org/what_do_we_want/news_and_events_PMLD_seminar.html
The PMLD Network in the UK have put out another great resource called Top Tips for Partnership Boards. This excellent, simple brochure gives food for thought for Boards of Management and other bodies that need to listen to people with PIMD. Partnership Boards are encouraged to appoint a PMLD Champion, find out what life is like for someone with PMLD and their family, have a slot for PMLD on the agenda for each meeting, and make sure that boards consider the needs of people with PMLD in everything they do.
This last point is particularly resonant for me, as I've often considered trying to create an audit type system that enables people to critically analyse existing policies and procedures for the aplicability to the people with the most serve disabilities (adding this one to my list of things to do when I finish my PhD!)
sheri

Hearing from the seldom heard

Here is a new project for BILD (British Institute of Learning Disability). It focuses on people with PIMD and advocacy, rights, and complaints. I've only had a little look, but it looks like an excellent resource.

http://www.bild.org.uk/humanrights_seldomheard.htm

Invasive Procedures

The following event is to be held in Scotland tommorow - shame Scotland is a few hundred, thousand kms away... will feedback any further info I can get.

Invasive Procedures: Breaking barriers and achieving control for people with profound & complex disabilities
Discussion at the conference will contribute to the development of planned expert consensus guidelines on invasive procedures.
Individuals with profound intellectual and multiple disabilities have complex and significant healthcare needs.
For many, a wide range of invasive medical procedures are required including the management of epilepsy through the administration of rectal anticonvulsants; severe spasticity requiring Baclofen implants; the management of respiratory problems through the use of ventilators and deep suctioning; and procedures requiring non-oral feeding (gastric and nasogastric). Execution of these procedures by social care staff remains a contested area, with some staff refusing or not being allowed to carry out one or more procedures, leading to people with profound intellectual and multiple disabilities being denied services.
There is a recognised need for change in the way this vulnerable group receive care and access services, and in particular health services.
This is supported by Mencap’s Death by Indifference enquiry report and a number of other reports from across the UK, notably: Healthcare for All; Equally Well; Same as You Review; and Valuing People Now.
The research project “Practice and Policy in the Administration of Invasive Procedures for People with PIMD”, supported by the Scottish Government, is at present being undertaken by PAMIS’ Invasive Procedures Working Group. This work will be reported as background to the conference.
Speakers will address the changing needs of people with profound and multiple learning disabilities and the ethical issues underpinning invasive procedures. Family experiences will be addressed as will the training needs of parents and care staff.
Workshops will be conducted in order to develop a consensus on good practice in this area.

For further info go to the PAMIS website

Makes me think of some of the issues in Australia around training staff in the administration of intranasal midazolam for status epilepticus.