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