Friday, 30 August 2013

Activism, Welfare and Support

Activism and Welfare

Many disabled people in Britain today feel threatened, scared and under attack. Many do so with good reason as cuts begin to bite, whether it be on the ground via social services, or financially with council tax, bedroom tax, LHA cuts, the uprating bill and possibly the benefits cap (the DWP is so far refusing to establish how many families affected contain a disabled member). More cuts are yet to come with, for instance, the abolition of SDP (Severe Disability Premium), the halving of the disabled child premium for those on Mid Rate Care DLA, or the removal of Disabled Tax Credits (link). Finally many will or are already losing out with the replacement of DLA with PIP, with an estimated 500,000 disabled people losing the benefit altogether.

It is little wonder then that public discourse surrounding disability has, in recent years, mostly focused on welfare. Some disability activists are dismayed by this and regard it as a failing of modern day disabled people and activists. I contest this view. The only reason disability welfare is at the forefront of disability activism is because it is currently the subject of sweeping reform. Many disabled people depend on benefits and it would be irresponsible to ignore this. If reform must take place then it must be done properly so that disabled people are not left without the support they require. So far I have seen no indication that this is the case. Until I do, I will continue to highlight the problems the reforms are throwing up and seek to amend them.

This isn't to say I don't understand the concerns of those who want disability discourse to be about more than welfare. This is NOT what I would choose to be talking and campaigning about. Indeed until a few years ago it wasn't. It was only once the changes started coming in under Labour (including a plan to abolish DLA entirely) that I felt obliged to change tack. I have been on the backfoot ever since, fighting to retain the most basic of support we already had, rather than moving forward and in particular looking at wider more inclusive support and issues than simply benefits.

Changing the Language

However, I also agree that I am uncomfortable with some of the language used by the press, in particular surrounding "fitness to work". We need to ensure that those of us who cannot work get the support we require. On the other hand we need to be careful that in doing so we do not reinforce the stereotype that all disabled people are completely incapable of work.

This is why while I agree some of the decisions made have been totally absurd, headlines like "amputee found fit for work" are completely unhelpful as it reinforces the wrong impression that ALL amputees cannot work. In practise we know that given the right job, support and the right unprejudiced employer, there is no reason some amputees cannot work. We do them a disservice by implying otherwise.

Note: the following paragraph relies on the WCA being correctly applied and disabled people being correctly placed in the support group or the WRAG

I believe part of the problem lies with the DWP language itself of "fit for work". While it may *possibly* be appropriate for people placed in the support group, it is inappropriate for those placed in the WRAG who, in theory, (IF the system were working correctly) are those who can at some point return to work with the correct support. More to the point they are supposed to be those who currently are able to use support to start preparing for work. A better headline might therefore be "Amputee denied support to find work".  

You might tell me this is just language and semantics, but I think it places a different emphasis on things. Instead of trying to divide people into those who can and can't work, those who are fit and unfit, we are trying to identify people who require extra support to enter employment, due to either physical or attitudinal barriers.

As to what language to replace "unfit for work" with, perhaps "face barriers/extensive barriers to work" would be more appropriate. If this is too complex, perhaps just "difficulties" could be used.

Proper Test

Unlike the WCA a proper test should therefore look for and identify what medical, societal and practical barriers to work the disabled person has, so for example including such things as transport and prejudicial discrimination as well as medical and functional impairments. 

If these are so great that they cannot reasonably be overcome then the disabled or sick person cannot be expected to work. Additionally if, when every practical and attitudinal barrier has been addressed the person still cannot work (for instance due to medical issues) then they also should be fully and unconditionally financially supported.

If, on the other hand, the barriers could reasonably be overcome with access to support available through current government funded schemes such as Access to Work, then the disabled person should be given and must use every practical support available to do so. This practical support does NOT happen now and is one of the biggest flaws in the system. Given the time it may take to take advantage of this support, added to employer discrimination, the disabled person should also be fully financially supported.

If the person does not have any significant barriers to work, then they should claim JSA.

Proper Support

Note: This support should be available to all whether or not they are "expected" to work.

Before I became involved with campaigning on welfare, I was partially interested in issues which enabled disabled people to be independent. Examples include the adequate provision of wheelchairs, appropriate social care and accessible accommodation. 
If any one of these is lacking then the disabled person may be unable to work. For instance if they do not qualify for an electric wheelchair but cannot leave the house without one, they cannot get to work independently. If their care agency will not send carers before 9am then they cannot get to work on time. If their house isn't accessible they may be housebound.
If the disabled person has problems with these and they are a major barrier to work, then DWP support should include sorting those problems out in tandem with the appropriate government agency.

Disabled people should from the outset have access to facilities such as Access to Work so they can become aware of all technology and equipment available to them under the scheme. They should also have access to training to learn to use any such equipment if necessary. This could help people both privately and in the workplace. They should also be informed of such things as whether they would get help with transport to work and what limits this would have.

Another important issue is education and training. It may well be the case that newly disabled people need to retrain or, given previous bad record on education, longer term disabled people may need access to higher education for the first time. They should be allowed and encouraged to do so, even if it means being unemployed for longer.

Disabled people should be valued as much as their non disabled counterparts. They should be expected, encouraged and assisted to apply for jobs suitable to their experience and education. It is currently far too common for disabled jobseekers to be routinely directed to inappropriate lower level jobs instead of being given good advice and support.

However it should be recognised that some "barriers" come in the form of reliability, endurance, concentration and other such medical issues. While full time paid employment may be a reasonable goal with support for some, a few hours volunteering may be the only viable option for others. Realistic goals should be set rather than hounding people into full time employment at all costs. Therefore part time and volunteer work should be deemed acceptable and even encouraged for those whose barriers to work exclude any other form of "employment".

For those who are unable to take on any form of employment, paid or otherwise, a more flexible approach should be taken to the nature of "work". Many very sick and disabled people for whom employment is impossible nonetheless attempt to maintain hobbies, sports or leisure activities. This should be supported and encouraged both for long term mental and emotional welbeing or for some, from a colder more practical viewpoint, as possible first steps on a road to recovery. This support could take the form of exploring the possibility of sporting, craft or musical activities in the area, developing IT skills such as blogging and twitter, or signposting to support groups (online or otherwise).

However none of this addresses the prejudice among employers (for instance 45% believe they cannot afford to take on a disabled employee). So parallel to this would have to be a drive to encourage or force employers to take on disabled people on their own merits. This could include dispelling "Health and Safety" myths, dispelling sick leave myths, advertising the Access to Work scheme, improved media coverage, paid work experience placements, and outreach projects with working disabled people, particularly those who are on flexible working patterns. It should also include reminding employers of their duties and responsibilities.

As all of this will take time, it should be accepted that most disabled people will be unemployed for longer. This support should not be time limited as it has become now.

In summary out of work disability benefit should change from just identifying people who can't work to identifying the support disabled people require and taking firm steps to make sure they get it while simultaneously tackling employer discrimination and encouraging more flexible working practises.
I emphasise though that this should be as well as and not at the expense of those whose barriers to work are so great that they are not able to work. However even for this group far more support could and perhaps should be given than at present.

Tuesday, 20 August 2013

Social Services Cuts on the Ground:

I feel very ill today. Not a day I would normally write. But what I heard yesterday was so shocking that I can't settle until I've written it down!

I received a call from Social Services yesterday, asking to come and visit me that afternoon regarding my care plan.
I was very pleased as I had been hassling them for the past three months to come and see me and update my financial assessment to work out my contributions towards my care.

It soon became clear that this visit was nothing to do with this, but was my annual report "to check how my care plan was working out and that everything was ok".
I mentioned my issues with finance and the social services chap duly made a note to contact the finances department upon his return.

The chap was lovely: very friendly and understanding. He had a long sheath of notes from the last time I had gone through this rigmarole so he said we didn't have to go through all the questions yet again. He asked how I managed my carers/Personal Assistants (PAs), what work they did for me, how I managed and if I was happy with what I had. He checked on my safety, particularly asking after the number of falls I have, my alarm button, and my arrangements in case of particularly bad seizure clusters or coming out of hospital.

So far, everything fine and dandy. As we finished up he laughed about the situation with Finance commenting that normally they would chase up any "change of income" like a flash, seeing an opportunity to get more money out of the client.

He then added: (pretty much exact wording as far as I can remember while it is fresh in my mind)
"I mean, at the moment, I'm going round and our clients have to justify the care packages they've already been given. We're told, go out there and do everything you can to save money. If you can find any reason, any small excuse to reduce hours, do it. I have to save a certain amount every week. 

I mean you're ok. I'm going to go back and say "this is great, good value for money, whatever you do, DON'T touch it." But because I haven't saved money with you, this means I'm going to have to cut money from other people I see.

It shouldn't be too bad at the moment because I managed to save £750 from a care package last week, which is great. So they're really pleased with me at the moment... well... I suppose it isn't great for the poor sod who lost his care package, but I mean, I did find them alternatives so I don't feel too bad about it.

You can usually find ways to save money. And I do find people who receive care who shouldn't be. I'm usually really pleased to take away their care. But I mean, they're usually the people playing the system and who should be working but aren't."

I don't know where to start with this statement.

a) I was sent someone here on false pretences. They were not here on my behalf to to "check how my care plan was working out and that everything was ok". They were here on behalf of the council to see if they could cut my hours at the slightest excuse.

b) Targets are being set per council worker, ie per case load. This means that it doesn't matter how much in total need that case load is, a certain amount MUST be saved, regardless of the needs of the individuals concerned.

c) The attitude being fostered is obviously poisonous. This was on the surface a genuinely nice sympathetic guy. Yet he had been suckered into a system where he thought it was right to go round taking care hours away and judging people.

And before you tell me that he is a professional who would know who is playing the system, I would add that he had never heard of lupus, a relatively common and in some cases debilitating autoimmune illness which renders 50% of patients unable to work. Yet on the surface most people "look well". How many of the people he has judged "capable of working" and "undeserving of care" have similar diagnoses of which he is ignorant?

There are a lot of people dismissing claims of problems and cuts in social care as scaremongering. Yesterday's experience is to me direct personal proof of the effects on the ground.

P.S.  I'm spending today feeling guilty at the thought of those unknown unsuspecting fellow disabled people in that chap's caseload who ARE going to lose hours from their care package this week, simply because I did not...