Paddling one’s own canoe: A focus on the implications of a ‘disability- rehabilitation industry’.
Hello again and welcome to my January 2012 Blog.
Happy New Year!
“Once upon a time, long ago and far away…” is how many stories begin. Here is a rather cynical little story about a canoe race between a hypothetical NHS Trust team and a Japanese team, both of whom had practiced hard to reach their peak performance. On the day of the canoe race, the Japanese team won. The fictional NHS Trust managers were puzzled by this outcome and when they investigated, it transpired that the Japanese team had 8 people paddling and 1 person steering, whereas the NHS Trust team had 8 people steering and 1 person paddling. The NHS Trust senior managers immediately hired a consultancy company to do a study on the NHS canoe team’s structure. Many thousands of pounds and several months later, the consultancy company concluded that ‘too many people were steering and not enough were paddling’. In the hope of winning the race the following year, the NHS Trust canoe team’s structure was changed to the following: 3 assistant steering managers; 3 steering managers; 1 executive steering manager; and a director of steering services. In other words a performance appraisal system had been set up, in order to give the person paddling the boat more incentive to work harder. The next year the Japanese canoe team won again; so the NHS Trust laid off the paddler for poor performance, they sold the paddles, cancelled the capital investment for a new canoe and new equipment ….and the money saved was used to give higher than average pay awards to senior management.
This story is of course purely fictional and in the highly unlikely instance of there being any passing resemblance to any UK NHS Trust, this would be wholly coincidental. The reason I have narrated this tall tale is to make a point that is glaringly obvious to nearly all of us; that scarce resources invariably need to be channeled to the frontline or to the customer/service-user interface; those paddling the canoe are critically important. A good way to elicit how this is likely to work best, often is to consult the person rowing! Some politicians would argue that changes within the sectors of health and social care aim to try to reconfigure services, so that frontline services are protected and that any ‘excess’ at higher levels is removed to promote increased effectiveness and efficiencies. History’s first draft will chronicle whether these words or this rhetoric becomes an acceptable reality, or whether the consequent changes merely wield an axe over health and social care provision.
However a possible outcome of health and social care change is a potential increase or growth of the ‘disability-rehabilitation industry’. It can be argued that disability has moved (and continues to move) from charity and care, to commodity and corporetization. It is suggested that economics and politics have facilitated an environment in the USA which allows a multibillion dollar industry to flourish. Similarly in Europe and the UK, pharmaceutical companies, managed care, home care, rehabilitation product manufacturers, and insurance companies to name but a few examples, are all providing goods and services for needs… …or are cashing in on disability, according to which opinion one subscribes to. With an estimated 500 – 650 million disabled people in the global population (which is estimated to rise to 800 million disabled people worldwide by 2015), and whilst 88% of those live in the world’s poorest countries, clearly there are still huge potential ‘markets’ for the disability-rehabilitation industry. The figures above also suggest that disabled people are the largest minority grouping within the arena of multiculturalism. Just as with many other minority groups, disabled people are more likely to be victims of crime, to be underrepresented in mainstream education, work, leisure and communities, to suffer economic hardship and to receive charity, than non-disabled people. Yet disability is in itself both a constant and a fluid thing. Research in the field of disability studies suggests the notion of ‘TAB’ – Temporarily Able Bodied – which recognises that many people who are currently non-disabled will at some point become disabled, simply because 97% of impairments are acquired rather than congenital (i.e. a condition with which someone is born). There are quantifiable and relatively constant numbers of people with Down Syndrome for example, but also uncertainty or fluidity regarding the projected or estimated numbers of people who will develop disabling conditions during their lifetimes or who may acquire or develop needs due to injury.
Yet it would seem that despite the lack of a level playing field in respect of the life experiences and chances that some disabled people may have had to build up a ‘KASH’ (knowledge, abilities, skills, habits) balance, as compared to their non-disabled counterparts, this is the group of individuals who are perhaps likely to be increasingly expected to purchase support and care, as nationally there is a move by some health and social care providers to become commissioners rather than providers of care, from the care-rehabilitation industry above. As more people are encouraged to manage personal budgets in order to purchase their care, there are (at least) three questions that carers, patients and service-users might be asking: is there something to buy that absolutely meets the required need out there in the marketplace; how is provision that service-users ‘purchase’ monitored for quality and fitness-for-purpose; and will good quality assessments by appropriately trained peopled be undertaken (and re-visited), in order to ensure that members of the largest minority group in the global population are not victims of yet another instance of less favourable treatment than non-disabled people?
Another little story that comes to mind is that which was written by the mother of a disabled child. She calls is it Welcome to Holland. She talks about the wonderful dreams and plans we often have during pregnancy regarding the coming baby and likens it to planning a dream holiday or trip to Italy. On the plane you are so excited about all of the places you plan to visit and all of the things you will do when you are there. Yet when the plane lands you are in Hollandand you are disappointed and confused because it isn’t where you had planned to be. However, if you look carefully you will see the beauty that is in Holland; the beautiful tulips, the canals, the picturesque windmills. It will have certain things that Italy may never have and you will meet some people you wouldn’t have met had you gone to Italy. You might not get Italian clothes, wine or food, but Holland has some really good beers (Source: Rebecca Greenwood, in Goodley, 2007).
This story is extremely insightful. When I cared for my father for nine years, during the earlier and middle stages of his Alzheimer’s dementia, I made new friends, experienced small and monumental changes, learned many new things and experienced emotions from exhausted despair through to sudden bright surges of happiness as I struggled to juggle the roles of mother, carer-daughter, wife, lecturer, etc…... I was most certainly in a ‘landscape’ I had never envisaged I would enter, but I did see metaphorical tulips, windmills and canals that I never would have, had I not become a carer. However, what would I have done had I found myself in ‘Holland’ and all the shops were closed, or if I didn’t understand what to buy, or didn’t have the right currency?
In these times of transition and change, social services, NHS Trusts and care providers need to remember that at the very heart of the care equation are very different individuals with differing needs and capacity. A care ‘marketplace’ can only operate if the appropriate infrastructure, support and monitoring is still undertaken by the appropriate bodies… …with a sufficient number of people still rowing the canoe. Otherwise the most vulnerable people might be trying to purchase care for their needs or for their loved ones in a marketplace where the following caveat still exists – caveat emptor (let the buyer beware!)