Proceedings
I am reacting pre-intentionally to the Triple C, a new assessment tool being used with people with severe communication impairments in my state.

"The Triple C is a communication assessment designed for use with adolescents and adults who have severe or multiple disabilities." (Bloomberg & West, 1999, 1) . It is "divided into 6 communicative/cognitive stages -

I know I'm "pre-intentional reactive" because I assessed myself and that's where I got most ticks.

The Triple C is published by the Spastic Society of Victoria.  It is recommended for use by untrained staff at day and residential centres for people with developmental disabilities.  Its purpose is unclear, as it is not associated with any intervention programs- all that staff end up with is a list of some things their clients do.  As the Triple C stops at about a three-year-old level, it does not include literacy.  It does not lead on to any other assessment, so no matter how you score you cannot move beyond being an "intentional referential communicator".  In fact, people with severe disabilities are unlikely to make it that far, as I will show.

I have had athetoid cerebral palsy since birth and was once diagnosed as having a profound intellectual impairment.  I cannot talk, walk or feed myself.  At the age of three I was admitted to St. Nicholas Hospital, Melbourne, a government institution for people with severe and profound mental retardation, and stayed there for fifteen years.  I'm the person the Triple C was designed for.  It could easily have been administered to me when I was lying on the floor at the age of sixteen with no wheelchair or communication aid.

I did really well on Stage 2, the Preintentional Reactive Stage.  I scored 15 out of 15 items.  With my comments in brackets, they were:

• Tries to repeat new or interesting events/movements [in my case usually unsuccessfully]
• Uses the same action on all objects e.g. mouthing, holding,  inspecting [I'm a good looker]
• Begins to show anticipation e.g. opens mouth on seeing spoon/cup
• Reacts to known noises e.g. microwave bell [especially the microwave bell- I have a startle reflex]
• Searches for sound sources - particularly voices
• Reacts when sees or hears caregiver(s)
• Smiles
• May respond to interactions by looking at the person and vocalising
• Shows an awareness of strange situations or people [I usually introduce myself, actually]
• Visually studies or inspects objects/people
• Visually follows slowly moving objects/people
• Alternates glance between two objects
• Sometimes uses his or her eyes and hands together e.g. looking and reaching for objects [mostly when using communication aids]
• Retains an object in his or her hand for 10 - 15 seconds [OK, I might have been boasting a bit here]
• Looks momentarily at the place an object disappears    
  
  (Bloomberg & West, 1999, Checklist)
  

• Shows persistent search for lost objects [I'm a quadriplegic - I don't lose objects]
• Shows internal representation e.g. puts shapes directly into form board [huh?]
• Predicts cause/effect relationships e.g. understands that electrical appliances need a switch to turn them on [yes]
• Uses past experience to solve new problems e.g. finds a stick to hook an object and drag it within reach [huh?]
• Matches on the basis of colour [yes]
• Uses objects symbolically e.g. pretends to use a brush as a microphone, pretends to use a tennis racquet as a guitar [I'm thirty-something, dammit - a bit old for air guitar!]
• Looks at, points to or shows pictures of familiar objects on request [yes]
• Responds to simple two steps (sic) instructions [how? I'm a bloody quadriplegic!]
• Indicates absence of familiar people  [yes - I spell it out]
• Uses photographs or pictures (e.g. line drawings) for choice-making/communication [no - I spell]
• Produces approximately 50 single words or signs [in my dreams]
• Begins to produce two word/two sign combinations [ditto]

"For the purpose of this assessment, the individual's level of functioning is indicated by the highest stage at which the majority of skills or behaviours are observed. ... The aim of the assessment is to determine the communicative/cognitive level which best represents the individual's level of functioning." (Bloomberg & West, 1999, Checklist) 

As Stage 2 was the only stage apart from Stage 1 in which I scored a majority of items I'm at the Preintentional Reactive Stage.

The Triple C has several fundamental problems.

First, it confuses cognition and function. 

"In early development it is difficult to separate cognitive and communication skills. ..." (Bloomberg & West, 1999, 4)

Second, it is based on scales designed for infants.  In developing the Triple C, the authors say they investigated five developmental checklists, including the Uzgiris and Hunt Scales of Infant Psychological Development (1980), and Duncan's 1983 guide to "Communication Levels in Prelinguistic Handicapped Children".

Third, it doesn't take account of age, functional impairments such as blindness, deafness or quadriplegia, or the effects of medication or depression.  The authors have tried to avoid some of these pitfalls:

but the items I have added in brackets show that they have failed.

The Triple C reminds me of other inappropriate assessments I have suffered in the past.  When I was seventeen, for instance, a pediatrician was asked to assess my intelligence.  The doctor refused to be told how I signaled "yes" and "no" - he said it might bias his assessment.  He refused to see me in my posture chair, insisting that I be lain on my back.  I couldn't sit up unsupported, and I couldn't use my hands.  He wanted me to reach for a plastic ring, and when I didn't he concluded that I was functioning at a less than a six months level.  I was seventeen - what would reaching for a plastic ring have proved?  That I was a good baby?  On his tests I could never have shown that I was intellectually normal.

The Triple C doesn't ask if the subject can indicate "yes" or "no", or whether s/he uses a communication aid.  It may be obvious to the authors that this is important, but the Checklist is designed for "caregivers who may have received minimal formal communication training." (ibid., 2)

The importance of the Triple C is its potential to stop people like me ever finding a means of communication.  There is no suggestion that any subject should be referred for AAC, not even 'Joe', one of their examples, who "works part-time in a garden nursery and lives semi-independently with a work-mate", "enjoys a good chat" and is rated Stage 6 (ibid, 14).  Presumably this is because "research has shown that adults, particularly those who present as preintentional or unintentional communicators are unlikely to progress through a developmental hierarchy.  The goal of intervention is instead to increase the frequency of use of existing skills and the establishment of emerging skills." (ibid., 37)

Every person with severe communication impairments believes in miracles.  I am one of the few who has experienced one.  I was given a voice through AAC, and came out of a mental retardation institution to graduate from university.  I didn't do this by progressing through a developmental hierarchy; I did it by learning to read and spell at the age of sixteen.  Nothing else about me changed. 

Any assessment which suggests that learning is not possible for a given group is founded on prejudice and supports prejudice.  Before any checklist or assessment which labels non-speakers is published there should be a process of peer review; review not by professionals but by the peers of those who will be assessed.
This presentation will examine procedures for making professionals accountable.  It is no longer acceptable for professionals to choose the standards we have to measure up to.  Nothing about us without us.

References:
Bloomberg, K., & West, D., 1999, The Triple C Checklist of Communication Competencies - Assessment Manual and Checklist, Melbourne, SCIOP

If you're interested in my other work, check these out....

If you want to know about my years in hell, try St. Nicholas Hospital.

If you want to know what it did to me, read My Frankenstein.

If you want to know what I think of euthanasia, read this.

If you want to know more about my story, read the book I wrote with Rosemary Crossley - Annie's Coming Out, Penguin Books.  It's out of print, but second-hand copies are available on Amazon and Alibris.

If you want to know how I got out, look up Facilitated Communication Training.

If you want to know why communication is so important, read The Right to Communicate.

And read about the people who are trying to stop it.

And there's my work on The Terrible Triple C, another one of the ways in which professionals bastardize people with disability.

If you want to know how I enjoy myself, watch this.

Here are a few links to friends.

I also work for DEAL and CAUS, and speak on issues of disability.  For my most recent  articles on people without speech being bastardized see No Angel and Buried Alive.

I was honoured to be awarded a National Disability Award in 2008, for Personal Achievement: I don't really believe in personal achievement in this area, though, and I was rude enough to make a rabblerousing speech at the awards ceremony.

If you want to contribute something yourself, give some money to DEAL; they're working to see that nobody is left without a voice.

Back to the home page and start again...

Warning: there is quite a bit of overlap between these articles.  When you take as long as I do to spell a sentence you use it as often as you can, and the hell with repetition.