Vote - Help human rights activists to be safer from the threat of violence, torture or disappearance.

Help Amnesty International develop an app to keep human rights activists safe.

Their app has been entered into the Google Global Impact Challenge so that they might win the funds to develop it.

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Petition - Stop the GP Visits Cap

Click Here to Sign the Petition

Our Government is floating plans to cap the number of times we are allowed to visit our GP. If we run out of visits – because we've got a sickly child or long-term health condition, for example – we could be forced to pay to go elsewhere.

This could seriously impact both the finances and the health of those in our society who are disabled and/or on low income. Disabled people are much more likely to be on low income and therefore would be in an incredibly bad position. 

Quotes from the Department for Work and Pensions:

"There are over eleven million people with a limiting long term illness, impairment or disability in Great Britain."

"A substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled."

http://odi.dwp.gov.uk/disability-statistics-and-research/disability-facts-and-figures.php

News - Collin Brewer Urged to Resign after Disabelist Comments

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News - Judicial ruling says sickness benefit test is unfair for people with learning difficulties and/or mental health problems

Click here to read more

Petition - Push For Action: Improving support for adults with Autism

Click here to help adults who have Autism

News - Death by Indifference

click here to go to Mencap's article

News - Gig Buddies: A chance for people with learning difficulties to lead more active social lives

click here to read the article

Petition - Stop the Bedroom Tax

Click here to see why Mencap want to stop the bedroom tax, and to add your name to the petition.

Blog - Watch TV? You Must Have Learning Difficulties

Is watching football all day, most days, a symptom of learning difficulties? My manager seems to think so.

You see, one of our clients does mainly that. Oh he goes out and does other things too, but the majority of his time is spent watching the footy.

My manager has decided that this is because the staff don’t communicate with the client effectively enough. The argument goes, that if we were good at our jobs, he'd suddenly jump at the chance of turning off his telly and doing x, y or z out in the community. Oh we need to improve in other things too (i.e. finding out about things in the community in the first place that he might like to do), but it’s the way we’re telling him about these things that we’re apparently failing at.

Now don’t get me wrong, I'm all for trying different methods of communication (pictures, videos, you name it) and finding out what might be the reason behind someone not wanting to go out (could be scared of bullying, running out of money, have some kind of phobia…) But once we have exhausted our options, I really believe that the clients lack of enthusiasm for the outside world might really just be that he would prefer to watch tv. It might be that simple.

When I tried to explain this to my manager, he replied ‘but that’s just sad’. So I told him that my preferred day off constitutes playing 12 hours of minecraft whilst wearing pyjamas and eating porridge. One of my colleagues laughed, but my manager just gave me a slightly annoyed/bewildered stare. I pointed out that if one of our guys did that we’d probably say it was a symptom of his learning difficulty, and that we needed to ‘do something about it’. I told him that all I was asking for was that whilst we try different methods of communication, I’d like it if we kept in mind that it might actually be our clients’ preferred method of enjoyment. (Adding a silent ‘and you keep in mind that his lack of engagement in the community might not be our 'fault'.)

I get that that’s what we’re supposed to do though – get him into the community. Our clients are funded by ‘supporting people’ (SP). And since the companies’ money comes from SP funding, our support is supposed to be tailored to the SP standard of working towards outcomes. (Joy of joys.) ‘Enjoying and achieving’ is a subsection in this list of outcomes.

And so the managers say – ‘Get them out into the community! You know, fresh air, new horizons, it’d do them good’. 

And of course it’s a tick in the ‘enjoying and achieving’ box that the SP funders look for when they come to evaluate our work. (But of course, we're working for our clients, not SP. In theory.)

It’s a shame that my manager thinks that neither watching football on the telly, or playing minecraft in your pyjamas, count as ‘enjoying and achieving’. Even though my client has learnt enough about football to win on mastermind, and I have built an aesthetically pleasing yet practical fort. I'm just lucky that I don’t have a team of people planning on an intervention any time soon.

~ Sally Forth

Blog - The Right to Shower Alone (#3)

If you've read the previous posts about my clients' care being changed (without any mental capacity assessment or best interest meeting), here is a brief update of what's happening in my ongoing fight to stop support workers from watching him shower:

I phoned care direct to ask for advice and check whether I was right in thinking it was an official violation of his human rights (rather than just my opinion). They forwarded me to the safeguarding team, who, surprise surprise, said I was spot on. (They said it's not a safeguarding issue though, which is interesting...)

I also phoned a couple of the clients' male support workers to explain what was going on and ask if they could talk to the client about how he feels about it. (I figured a woman asking him about it might be more uncomfortable for him.)

And result! One of the support workers will fight alongside me at the next team meeting, at which I will bring up the fact that the safeguarding team agree with me. And not only do they agree, but they have asked me to let them know what the outcome is.

Game set and match.

~ Sally Forth

This is post 3. Follow the story here:

1. Stupid Quote of the Day

2. I've Made an Enemy

Blog - My Weird Neighbour (or Stupid Quote of the Day #2)

I always hear people saying that such and such needs to happen because the client ‘has learning difficulties’. It’s used as an explanation for treating our clients differently than we’d treat most other people.

Now, it doesn’t take a genius to realise that ‘because they’ve got learning difficulties’ is not a great justification for treating people differently. You might as well say ‘because the sky is blue’ or ‘because I think so’. At least the later would be more honest.

But what people tend to mean by ‘because they’ve got learning difficulties’ is: ‘because they are vulnerable, and it is our duty to make sure they’re safe/healthy/etc’. This is a very noble sentiment, and essential when working with people who are vulnerable. The problem is that it is used to justify A LOT of things. And some of these things make the people in our care feel miserable, frustrated and down-trodden.

‘Because they are vulnerable, and it is our duty to make sure they are safe/healthy/etc’.

Let’s look a bit closer at this.

I know I bang on about human rights, but I think it starts there. I believe that

-          People should be treated with an equal amount of respect, whatever their age, ability, gender, race and anything else you could care to mention.

-          People have the right to be 'weird', have different opinions, different goals, or a different understanding about what 'the good life' is.

-          People who are physically or intellectually disadvantaged should have a helping hand to ensure that they have as fair a shot at having a good life as those who aren’t.

So that’s where carers come in. We are there to attempt to level the playing field. Not to shape their lives into what we think looks acceptable or enjoyable. They may not find that life acceptable or enjoyable. Treat others as they would like to be treated, not as you would like to be treated. (Or something like that, I have to think more about that one, what with sadists existing.) But people start getting over-zealous and middle class when they are tasked with caring for those who are ‘officially vulnerable’. They are so worried about being found at fault that they mistake respect for neglect. Or they care so much about their clients that they can’t stand to watch them fail, get things wrong (at least in their eyes, the client may have a different opinion!), or choose not to look after themselves in the way their support workers think they should.

But nobody intervened when I found out that my weird neighbour mainly eats tinned beans. (“I’ll hold him down, you phone Care Direct!”) Or when I saw someone walking barefoot through town. But the distinction is that ‘they aren’t vulnerable’ - so they can do what they like.

But vulnerability isn’t some universal wildcard you can play to justify forcing your standards onto somebody else. It should only be used when the person is genuinely unable to understand their options and the consequences of their actions. And even then it should only be applied to those areas where they lack this ability. Because that lack of understanding is what makes them vulnerable. Sure, other things make them vulnerable too - the way people treat them for instance, but it all boils down to their lack of understanding and their lack of ability to make an informed decision.

But by all means let them know what you think their options are, or let them know how they can find out what their options are. Same goes for consequences. So long as you’re not hounding them, and so long as you’re respecting their choices.

It’s hard, I know. That’s our job. But it’s their life.  

(And if all else fails, think about my weird neighbour.)

 ~ Sally Forth

Blog - Enforced Self-Improvement

In my job we have to work towards "outcomes". That can include anything from "not losing your tenancy" to "learning how to cook". As long as it's on the supporting peoples' criteria, and it's something the client needs support for, it's arguably an outcome.

Something's been niggling at me though. And that is "What if the client doesn't want to?"

For instance, I have a few clients who are quite happy to go on as they are. They don't want anything to change. The problem with this is:

- they are funded for a specific number of support hours a week.

- these hours are for "meeting outcomes"

- we're not using these hours to "achieve outcomes"

And so it comes down to a few things

- I'm nagged by management to nag my clients to "improve their skills"

- I'm told that their care plan clearly states they need support in x y and z (although said client doesn't want it or...arguably...need it) which is why they are funded a certain amount of hours.

- I'm told that if they don't use the hours, they risk losing those hours, and even losing their home. (You see, companies who provide care and housing get more money from tenants who need a lot of hours of support. So bye bye to those who's hours drop. Another MASSIVE bug-bear of mine.)

But leaving aside the problem of losing their home (I think that's self evidently unethical, especially if they weren't told before their tenancy that this might happen) should we be nagging them to change?

Personally, I think that as long as they understand the repercussions of their decisions then the answer should be a resounding "NO". I hated that enough when I was a kid. And if I were told daily that my idea of a good life didn't fit the standards I was supposed to have, I'd kick off. Another example of discrimination? I think so.

And yet, part of my job is to nag indiscriminately. My guess is that it is partly to do with care companies worried about losing hours (therefore funding, therefore money), and partly because they are worried about losing their reputations as glorious providers of life-changing support. 

But nevertheless, I choose not to constantly ask my clients if, for instance, today is the day they will finally decide to cook something. And I don't think that should be frowned upon. 

~ Sally Forth

Blog - I've Made an Enemy (the right to shower alone #2)

I really don't like making enemies. But sometimes you have to in this job. No matter how tactful you try to be. But if people don't listen...

So if you read the last post: the upshot is that my manager (nice guy I think, he's new) very calmly heard the evidence I'd brought, but said we'd still carry on. However, now there will be an emphasis on making sure that we give the guy a choice as to whether he is watched in the shower. A small victory of sorts. At least we're asking now rather than demanding.

But still, Miss "I understand about human rights but..." (my assistant manager) still fought me all the way. 

Here's the dilemma:

If he has the choice, and doesn't mind support workers watching him shower, is it unethical? Or inappropriate? Or both? Or neither?

If he has capacity, I'd say it would be inappropriate. Picture it: A man capable of deciding how he washes himself, and yet an overly zealous support worker is looking on. And by law we have to assume he has capacity because we haven't tested for it.

But if he doesn't have capacity, and doesn't mind? Well his rights have still been violated. 

But it's complicated. He doesn't seem to comprehend how weird it is, or question it. I guess because he's been so institutionalised. (He used to have this sort of care when he was younger.)

Still, either way, I've refused to watch him shower. I told my manager that I don't believe the client understands his right to say no. Since we have to assume capacity at this point, we have to assume he can do it on his own. He doesn't listen to people and is in his own little world. If I asked him if I could sell all his furniture, he'd shrug and say he didn't mind. He's used to support workers making decisions for him. 

Of course, Miss "human rights but" was saying "but if his lack of hygiene effects his life that will upset him much more than being watched." 

Well firstly that's debatable. But more importantly, if he has capacity, we need to respect his right to make decisions, even if we think they're the wrong ones and may harm him. We also need to respect his right to privacy. We have that right so why shouldn't he? (And don't you even dare mention the term "learning disabled"!)

So...she doesn't understand what her job is, and she now hates me. 

But because so many people have no idea what our jobs in care actually entail, I like to think that if I'm not pissing someone off, I'm doing something wrong.

~ Sally Forth

This is post 2. Follow the story here:

1. Stupid Quote of the Day

3. The Right to Shower Alone