Category Archives: Uncategorized

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

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.