'Attendant care' just doesn't cut it
In 1746, a group of London booksellers contacted the English writer Samuel Johnson to make a dictionary.
The dictionary was published nine years later. Known as A Dictionary of the English Language, it has been one of the most influential dictionaries in the English language and was only superseded over 100 years later by the Oxford English Dictionary.
Johnson's dictionary had a patron, or supporter - Philip Stanhope, the fourth Earl of Chesterfield. Stanhope wanted to make linguistic order out of chaos, and he expressed his support of Johnson in writing.
Unfortunately, Johnson had hoped for a more tangible kind of support. In an open letter to Stanhope, Johnson wrote his reaction (in part):
Seven years my Lord have passed since I waited in your outward rooms or was repulsed from your door during which time I have been pushing on my work through difficulties of which it is useless to complain: and have brought it at last to the verge of publication without one act of assistance, one word of encouragement, one smile of favour. Such treatment I did not expect for I have never had a patron before. Is a patron my lord one who looks with unconcern on a man struggling for life in the water, and when he has reached land, encumbers him with help?
What’s the connection with disability here? In the chaos and uncertainties of the NDIS, I would say that we need a dictionary of disability support: one that will better develop understandings of types of supports and what they involve. This dictionary would draw out the variations and clarify the subtleties of support needs between people who might at first appear to have similar support requirements.
Attendant care, for example, is a worthy and laudable service. But it is not the only answer in supporting someone to live as independently as possible. Attendant care doesn't cut it as a definition of the support needs of all people who require support to live independently. It never did, and it never will.
Who will help to provide a common language for disability services? The task is not beyond us. Johnson, virtually single-handedly produced a dictionary of 42,773 words with 114,000 literary quotations.
The basis of such a dictionary for the disability sector already exists. The International Classification of Functioning, Disability and Health, known more commonly as ICF, is the World Health Organisation framework for measuring health and disability at both individual and population levels. It is also what the NDIA uses to provide the classification of the areas of support.
There is a WHO publication that provides a beginners guide to the ICF, an ICF checklist which could be a useful tool for assessment and review of individuals, a practice manual, and even an Australian guide.
So where do we see this research and classification being applied under the NDIS in a way that interacts broadly with the support system?
Previously, disability began where health ended. Once you were seen to have a disability, you were in a separate category. Disability in the ICF involves one or more of the domains of impairment, activity limitations and participation restrictions. Dialogue on the assessments of these aspects in addressing a person’s disability is not well-represented in the current dialogue on supports under the NDIS. We are not using a common dictionary much, if at all.
Once you take a look at the guides, perhaps you will be inspired to take on the task of making such a dictionary. Or is there a forum or researcher for whom this is just the kind of thing they want to tackle?
One thing is for sure: Like Johnson, we need a better patron than the fourth Earl of Chesterfield, whose support was late, faint and insubstantial. It is time for those who say they are implementing or supporting the NDIS to extend their patronage; to embrace the challenge of making the dictionary of disability support so that, unlike Johnston, the service providers are not left by their patron flailing in the water to reach land on their own as best they can.
Samuel Johnson was paid 1500 English Guineas for his creation. This is equivalent in today's money to $370,000 AUD. This works out at around $41,000 every year he worked on the dictionary, and $8.65 per word. At these low rates, he could have been a worker in the disability sector!