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.

Arts and people with PIMD

Mencap have released an excellent video relating to the arts and people with PIMD. The video presents segments of practice from: Oily Cart, Project Artworks, Soundabout and the Unlimited Company.
Well worth a look
www.mencap.org.uk/inthemoment

Accessible toilets ! YAY

Getting out and about requires access to bathrooms - this is never easy for people who require an adult sized change table and hoist. In the UK, the Time For a Change campaign is leading the way with getting more REALLY ACCESSIBLE bathrooms around see http://www.changing-places.org/index.asp

Looks like Australia is moving on this too.
Somebody at an NDS session mentioned this the other day.
Today the Victoria Infoxchange posted the following.

News - Fully accessible community toilets and baby feeding room in Frankston central business district

Contributor: Kate Sommerville. Source: Frankston City Council, Department of Community Development. Posted: 01-04-2009

A fully accessible community facility has been set up at 5 Keys Street, Frankston, close to the central business district and the Frankston waterfront. Jointly funded by Frankston City Council and the Department of Human Services, this facility is the first of its kind in a community setting in Australia. It is located in a shopfront style building in a clean and attractive setting in the heart of Frankston. Accessible parking is available at the site. The Keys Street facility includes two fully accessible toilets with hoists and adult change tables, universal male and female toilets, a parent/child toilet and baby feeding room. One of the accessible toilets is available 24 hours a day from Keys Street. The other is only available during operational hours (see the attached leaflet). Both accessible toilets require use of an MLAK key which can be obtained from any member of the Master Locksmiths Association of Australia (MLAA) on the submission of documentation that the user has a disability. There is a charge of around $9. Information about registered MLAA locksmiths can be obtained by ringing 03 9645 9995 or 1800 810 698 (toll free), or visiting the MLAA website. The MLAK or universal key is a national key across Australia for disability related facilties including toilets and Liberty swings. The MLAK system was considered necessary to facilitate the ongoing safety of equipment. The toilets have no attendant but are cleaned and checked five times daily by city contractors. More information is available at the Frankston Visitor Information Centre on the waterfront or at the Civic Centre, corner Young and Davey Streets, Frankston. MLAK keys can also be borrowed from these locations on the submission of photo identification. Contact Name: Kate Sommerville Contact Phone: 03 9784 1967 Contact Email: kate.sommerville@frankston.vic.gov.au

merits of term PMLD (PIMD)

I recently submitted this to the PMLD Network mail list in response to a discussion regarding the term profound and multiple learning disability.

Interesting discussion.

Coming from a country that does not consistently use any term to refer to people with PMLD, I am a supporter of the use of the term PMLD (or PIMD profound intellectual and multiple disability). In Australia, this population is frequently invisible. Their are no collective groups like PMLD Network operating for lobbying or sharing information. People with PMLD tend to be subsumed into the "high support needs" group, but as stated by PMLD Network, this term is problematic as it is overly inclusive. Furthermore the high profile people in the high support needs group tend to be people with challenging behaviours, whose needs may be very different from people with PMLD and often responded to with more hast.

There will always be people for whom we do not know what their intellectual abilities are; for whom physical disabilities mask cognitive abilities. But I don't think this is a justification for dismissing the concept of intellectual disability altogether. Understanding intellectual disability is a way of trying to understand different realities, different motivations. Intellectual disability is not a moral judgement, it is a statement that somebody understands the world in a different way: memory, concentration, attention, learning, planning.

I recall Karen Bunning writing a few years ago about the expectancy cycle. Having low expectancies of somebody is damaging, and long recognised to be problematic. But having overly high expectancies of somebody can be equally damaging in setting the person up to perpetually fail with goals that are not achievable. How many times have you seen an intervention set up, only to have the person fail (and blame often hastily attributed to support staff, rather than evaluating the appropriateness of the intervention in the first place)? How many times have you gone along to training session or read a book and thought that the author had no understanding of the people you support, as all the techniques were based on having a symbolic understanding?

I think the term PMLD is useful and supports a shared understanding. Hopefully, this understanding of the meaning of PMLD is tempered by an understanding that we can never be 100% sure of cognitive level, that everyone is an individual, and that everyone should be supported to have the best possible life that they can have, regardless of a diagnostic category.

Sheri

Not Just Work: Exploring relationships between people with disabilities and attendant

I was pointed to this website. It contains some interesting stories by support workers reflecting on their relationships with the people they support.
There is a particularly interesting reflection by somebody writing about her relationship with a woman who doesn't use speech.
I'll be interested in seeing where this website goes in the future, particularly in relation to reflecting relationships with people with PIMD.
http://notjustwork.info/

Gastrostomy resource

New Resource and it is Australian!

There is a new resource out on supporting people who receive nutrition through gastrostomy. I haven't had a look at it yet, but the short snippet on the website looks good. Will let you know more when I've had a good look.

http://www.disabilityenterprises.com.au/content/well-enteral-nutrition-resource

Nate Hajdu's poem on friendship

I read this poem in a book (which I'll talk more about soon). On many levels in resonated with me (whilst not being religious) and thought I'd share it. It came from the Jubilee Association of Maryland website: http://www.jubileemd.org/template/page.cfm?page_id=45

My Friend Charlie
Nate Hajdu shared this heart-felt poem at the Interfaith Disability Pre-Summit in Washington, DC on September 22, 2005.

My Friend Charlie

He is my friend: I am his friend
I help him out: He helps me to learn
I help him to learn: He helps me to grow
I help him to grow: He teaches me to accept

His struggle: Is my struggle
His vulnerability: Leads to my respect
My respect: Leads him to trust
His trust: Leads to my devotion

His availability: Feeds my desire to be needed
I keep his secrets: He keeps mine
We have an arrangement
His lack of self-consciousness: Leads to my tolerance
His constant need for stimulation: Leads to my patience
His discomfort: Sharpens my sensitivity
His unhappiness: Is my challenge
His presence: Eases my isolation
His loyalty: Leads to my loyalty
Which leads to mutual appreciation

His brokenness: Makes me accept my own brokenness
Which leads to healing
His humanity: Leads to personal connection
His steadfastness: Centers me

His smile: Is my reward
His joy: Lifts my spirits
His happiness: Gives me a sense of purpose
His struggles: Expose my anxieties
Which tests me
Then strengthens me
And in turn bolsters my faith

In guiding: I am guided
In helping: I am helped
In teaching: I am taught

In his laughter: There is joy
In that joy: There is energy
In that energy: There is spirit
In that spirit: There is grace