|Mark and Steven Neary|
To give some background. Mark is the sole carer of his son, Steven, who is 23 and who has autism and other learning difficulties. From his experiences, Mark has concluded that the adult social care world is about many things, but one thing it's not about is..... care. The language used, and this is where the connection with jargon comes in, seems to mislead right from the start. Processes appear to come before people in a system of impenetrable management where money is the biggest consideration.
Day centres are closed down. Although you may have considered them a helpful lifeline, this closure is not a negative thing because it's been done to promote independence. Service user choice is also a fabulous phrase until you find it results in being given a sum of money to purchase your own care provider but no one provides care at those rates which are calculated for you by a fairer charging policy. Which also sounds good but isn't. It's clear that the jargon used to describe the process does not match reality. Perhaps it's more designed to describe what is intended to happen rather than what actually does? If this is the case, then there's clearly a huge gap between aspiration and delivery. And for that we can blame the paymasters, the budget cutters - the politicians.
Another point Mark makes about the jargon of the social care system is the way it seems to make Steven's life sound even less "normal" than it is. Here are some of the examples he gives:
1. Mark lives in his home. Steven's current placement is in the family home.
2. When Mark makes a pizza, he's making a pizza. When Steven makes a pizza, he's increasing his independence skills (as overseen by an occupational therapist).
3. If Mark cries, he's sad about something. If Steven cries, it is logged and analysed by the psychologist and positive behaviour team.
4. If Mark shouts or swears, He's angry about something. If Steven shouts or swears, it is challenging behaviour and new behaviour management plans need to be drawn up.
5. If Mark chooses between steak or fish for his tea, he's making a choice. If Steven chooses either steak or fish for his tea, he is being empowered.
6. Mark has friends. Steven has a circle of support and influence.
7. If Steve is asked what he wants to do with his free time, he's planning his hobbies. If Steven is asked what he wants to do with his free time, it's his person-centred plan.
8. If Mark makes an unwise choice, he's messed up. If Steven makes an unwise choice he may be lacking mental capacity.
9. If Mark sorts his CDs into alphabetical order, he's being a bit anal. If Steven sorts his Mr Bean DVDs into colour order, he is being inappropriately obsessive.
10. If Mark eats two Mars bars, he's being a pig. If Steven eats two Mars bars, he is challenging boundaries.
I find Mark's journal to be sad and infuriating: sad about the situation he finds himself in and infuriating because of the way he and Steven are being treated by the system. And he is certainly not
Diary of a Benefit Scrounger In Sue's words"I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me. Our lives are disrupted daily by the misery of a chronic condition".
Apart from the personal stories of Mark and Sue gleaned from their various posts, what I get from them is a view of the sharp end of our welfare state. It is not a view I can get from the press or TV. It's a raw statement of the way some disadvantaged people are being treated and, quite simply, it shouldn't be this way. I can't do anything to help Mark and Sue directly (apart from occasionally commenting on one of their posts to show some sort of solidarity and support) but I can bear their stories in mind when I am trying to interpret the pronouncements of Iain Duncan Smith et al. There's nothing like facts to deflate political jargon.