DaDa Fest - Working Lives - Here and There Press Release

5/21/2014 09:56:00 am BenefitScroungingScum 3 Comments

Next month as part of the annual DaDa fest in Liverpool there is a photography exhibition of disabled people's working lives, including a photo of yours truly taken by Adam Lee. Details of the exhibition below

DaDaFest - Working Lives - Here and There Press Release


Easy News Shortlisted For The Charity Awards 2014

5/06/2014 05:18:00 pm BenefitScroungingScum 1 Comments

Campaigning can be really tough, and often it can feel like we're not making the progress we would hope, especially in an age of austerity. So I'm really excited and thrilled that a project which we started with just a simple question has been shortlisted for The Charity Awards 2014. Congratulations to everyone involved in Easy News, especially to the consultants who write the paper, but also to United Response for being willing to take a chance on a new idea and work in a new way to make the paper such a success

You can download the latest edition of Easy News here for free! 

Improving access to news for people with learning disabilities

United-Response-500pxOne of United Response’s most passionate beliefs is that people with learning disabilities should be equal participants in society. However, it had previously discovered that far fewer vote in elections than the general population.

While the charity’s Every Vote Counts campaign succeeded in persuading the main political parties to produce easy-read manifestos, it realised that an accessible source of news was needed all the time for these votes to be meaningful. A baseline survey revealed that just 11 per cent of the charity’s clients regularly read a newspaper and that they did not generally feel informed about current affairs.

A lightbulb moment came in 2011 when disability activist Kaliya Franklin quizzed Ed Miliband at the Labour party conference and asked United Response to create an accessible news report about it. This was made available through social media and Kaliya and United Response began planning a regular accessible newspaper, Easy News. Funding was secured from the Big Lottery Fund for a six-edition pilot.

Easy News exceeded United Response’s expectations with 90 per cent of respondents to a survey saying it was easier to understand than other news sources while 78 per cent felt that politics was now relevant to their lives, compared to 31 per cent a year before.  By the sixth edition, 3,272 people had downloaded it – 250 per cent over target.

Additionally Easy News created work for more than 30 people with learning disabilities, while anecdotal feedback included one mother saying that a story about Winterbourne View “promoted a bit of a discussion with my son; a rare occurrence as he is not very talkative”.

This year, Easy News is being funded out of the charity’s legacy funds while a sustainable funding model is devised – probably involving advertising.

Charity Awards judge Danielle Walker Palmour said: “Easy News is a new thing in the world and it is rare to see something genuinely new.”  Richard Hawkes described it as a “really good concept”.


Hard Working Species, The 'Striver Scrounger' #BADD2014 Blogging Against Disablism Day 2014

5/01/2014 11:06:00 am BenefitScroungingScum 10 Comments

"I never thought I would hear you say that, I'm so proud of you" was LovelyCarer's (slightly teary) comment last week when she overheard me saying that I couldn't wait to go on holiday to have a break from work. Today is May Day, International Worker's Day and of course, the 9th annual Blogging Against Disablism Day hosted by Diary of A Goldfish. It's the 8th BADD I've taken part in, and reading back through my old blogs I was reminded of how much has changed over the past decade - coming to terms with disability, learning to life a life with disability that is full and rewarding, the removal of the security part of social support and just recently, starting my first paid employment since 2003.

It's been quite a journey! Whatever the politicians may say about not letting people fall out of the workplace, or that unemployment is bad for your health, for me, without that ten years of secure support I would never have managed to learn to live with my disability, let alone consider volunteering or working. The first few years I was in shock, then there were the years I had to learn to become an expert in Ehlers Danlos Syndrome, and all the associated skills needed to manage an unpredictable, rare condition. In 2007 I started blogging as a way of reaching out to other disabled people in similar situations. In the back of my mind was always the vague idea that blogging would be a good way of discovering whether I had any talent as a writer, that maybe it might lead somewhere, but it was a fun and interesting hobby which helped with being so isolated. Gradually I started to learn more about disability, about communication and became more interested in the emerging social media platforms. Somehow, without really realising I developed expertise about disability rights, how to use the political process and various media tactics.

Then, last year there was a profound change in my life. After a 14 month battle with the local authority I finally received a direct payments package sufficient to meet my needs and was able to employ a PA. Suddenly instead of spending every day with my primary focus being how to manage to eat, having a PA to support me meant being able to raise my ambitions. I can't overstate the importance social care has played in this, without it I would be straight back to putting all my time and energy into managing the most basic needs, and all the progress I've made, including employment, would be lost. The nagging fear that eligibility criteria will change, or further cuts to social care will mean a reduction in support never quite goes away, coupled with the certainty that should that happen, I will also be unable to work.

It's almost two months now since I started work as co-development lead for People First England. Enough time to have struggled through the financial implications of leaving benefits and waiting for wages and tax credits to begin. It's also been a 'too close for comfort' insight into why the use of food banks is increasing - politicians simply do not understand how, for people on very low incomes, just a week without income can plunge them into a downward spiral of debt and desperation, or how massive a barrier to starting work that can be.

I'm incredibly lucky, I have supportive friends around me who are in a position to be able to lend me money, but it is still humiliating to ask, and a pressure on friendships. I'm even more lucky to have the employer I do, as if I were working in a typical environment the challenges I've faced would have meant losing that employment as soon as I'd gained it.

I have that 'holy grail' of 'spoonie' jobs - I work from home, part time at hours to suit me. I'm supported by my employers to work remotely using Skype to attend meetings or conferences and to keep travel to the minimum. Even more than that, I have employers who remind me that if I'm not well and need 3 days or 3 weeks in bed, then all I have to do is let them know before turning everything off and going to bed.

I have employers willing to help me through the Access to Work process, which I applied for in early January and is still not sorted. Most of the equipment is now with me, and some of it even, sort of, works. However, I don't have any PA hours to support work, have no idea when or if Access to Work will ever grant those and I'm not allowed to use my social care budget for work. Social care is for social care, Access to Work is for work and apparently never the twain shall meet. Which is not overly practical when I need a PA with me at work events to do things like open doors for me, because they are social care not employment needs. Apparently the work PA (if I ever get one) is supposed to not open doors, or assist with getting me food but just be there for 'work' stuff. Stupid is as stupid does.

Access to Work is a fantastic scheme, but it is not operating as well as it could and should given that it is the only government project for which the treasury receives back £1.48 for every £1.00 spent. Huge delays in support arriving are incompatible with the realities of employment and employer needs. It is simply not reasonable to expect employers to cope with lengthy delay before someone can start work, especially within a national 'skivers' narrative and hugely competitive employment process.

I'm also not 'off benefits', I've just been re-classified as a hard working striver scrounger, which is a species of the scrounger genus never mentioned by politicians. I receive almost as much in benefits now, made up of Tax Credits and Local Housing Allowance as I did when I was out of work. However, as I also get a salary and have survived the debt and stress of the transition process I am much better off financially. This wouldn't be the case if I had had to access expensive credit from a payday loan company which most people have to do during that change-over as I would have been plunged into a debt/repayment cycle lasting months. Due to the limitations in hours I can manage to work for health reasons, even with a good pro-rata salary I cannot earn enough to support myself without those additional benefits.

I also have a job I absolutely love, which is an enormous privilege. This counters the fear that I'll never again find such an accomodating employer, and increases the pressure I feel to stay in work.

Because what isn't discussed by politicians, or the huge welfare to work industry, is that even with the right attitudes and the right support, managing to maintain employment with a fluctuating and significantly disabling condition which also causes pain, fatigue and illness is like walking a knife edge whilst juggling. There's always the risk that one of the balls will drop, and in the process cause injuries taking months or years to recover from. There will always be a lucky few who have skills and experience unique enough to make it desirable for employers to accomodate such extreme needs, but for most people and most jobs that simply is not realistic. Would Tesco wait months on end for their new shelf stacker to be able to start work? Could a school who'd employed a disabled teacher manage for a whole term whilst waiting for their support to arrive?

Of course they couldn't. And wouldn't. Why should they? If disabled people are to reach employment rates comparable to the rest of the population then there are huge changes of the kind outlined by the recent Labour taskforce report, Breaking the links between disability and poverty which must be implemented as a matter of urgency. However, as even one of the three major political parties in this country hasn't managed to understand the importance of access and ensure its availability I won't be holding my breath.

I just hope, that the next time I reflect back on a decade in my life, I will be able to say that things really have got better. Not just for a fortunate few, but for all those sick and disabled people who want employment and are well enough to manage to do so.


Actions speak louder than words - Labour publish Poverty & Disability taskforce report

4/25/2014 08:47:00 am BenefitScroungingScum 11 Comments

Last June the Labour party announced they had appointed an independent taskforce, led by Sir Bert Massie, to write a report looking at ways to break the links between disability and poverty. The report was published yesterday, without a press release, on Labour's policy submission site. This was a report commissioned and requested by the Labour party, which has been produced by volunteers who have given huge amounts of their time, for free, with the hope of being able to make sensible policy suggestions to improve the lives of disabled people.

As Neil Crowther explains on his blog, publishing the report, during the parliamentary recess, without the promised press coverage tells us that Labour do not want to engage with the suggestions made in the report, presumably because some of the suggestions involve spending additional money. Hardly radical within a report specifically commissioned by Shadow Ministers to break the links between disability and poverty, but clearly too radical for a party terrified of being accused of 'welfare spending' in the run up to the general election next year.

Despite this being a report about disabled people, written by a team led by and including disabled people there is not an easy read version available. I can only apologise profusely for this lack of accessible information for the one million people with learning disabilities who are eligible to vote. We did not forget any of you. An easy read version was requested some weeks ago, and quotes provided to the Labour party. The cost of putting the report recommendations into an easy read format was approximately £250-£300 - hardly in Liam Byrne "there's no money" territory.

The provision of accessible information tells people what an organisation thinks of them. Providing proper accessible information says 'we value you, and its really important to us that you have the same information as everyone'. Not providing that access, especially in a report about disabled people, by disabled people, commissioned to break the links between poverty and disability demonstrates a disdain for those disabled people. These are of course all the same disabled people that Labour would like to vote for them. Actions speak louder than words, and despite what they may try to say through the press or campaigners, the clear message here is that Labour do not have any significant policies to improve the lives of disabled people, and that they are not willing to publicise the report they themselves commissioned to try and find some of these positive policy suggestions.

If you would like to read the report, but require a different access format such as easy read then you need to contact the Labour party directly and request one. The contact details are here

Had there been a press release from the taskforce, this is what we would have said;

 “The taskforce concluded that Britain can and must invest public resources more effectively than at present to create the infrastructure of support that will enable disabled people to escape from and remain resilient to poverty.  This is especially so in these tough economic times when, despite public spending cuts, millions of pounds of public money is being wasted on poorly designed, ineffective and bureaucratic systems such as the Work Capability Assessment, the Work Programme and fragmented public services.  

So we call for real world assessments which focus on people's interaction with the world around them, including the labour market - rather than just on the functional impact of their impairment or health condition. We back the proposals of Disability Rights UK to replace the Work Programme with localised, personalised employment support that places disabled people and employers in the driving seat. We propose an uplift to investment in Access to Work - given the schemes clear returns to the Treasury -and we call for greater integration of employment support, health, social care and education to support people’sparticipation. 

We also explore how disability-related extra costs of living might be reduced, for example through national and local government using its buying power to reduce the costs of aids and equipment and through preventing benefits being swallowed up by social care charges.

We conclude however that disability-related poverty cannot be tackled without further investment in a disability costs benefit. This would take time to develop and implement, but we believe it is a matter of social justice:as disabled people have borne so much of the ‘austerity’spending cuts, despite pre-existing poverty and exclusion, they should be priority beneficiaries of the proceeds of inclusive economic growth.'


Journey to Work Part 5 - How can I claim expenses like Maria?

4/07/2014 10:09:00 am BenefitScroungingScum 3 Comments

Today marks the start of my fifth week in work. I think. To be honest it's all a bit tiring and I'm no longer sure. I love my job, but will that be enough? And did I mention the tired?

What I do know for sure is that my benefits stopped on March 10th the day I formally started work. Since then I've applied for tax credits, housing benefit and council tax benefit. There is a four week run on of Local Housing Allowance so that has continued to go into my bank account. But that's it. No tax credits. No letter acknowledging tax credits claim has been received. No wages til later this month. Oh, and no way of talking to anyone at tax credits to check they have got my application, just a recorded message explaining they are taking a minimum of five weeks to process claims and won't talk to claimants until after that time is up.

This is why people end up with payday loans or go to foodbanks. There isn't another way.*

If I make a genuine mistake filling out a benefits application I get fined £50

But if I were a Cabinet Minister, a former Minister for Disabled People, who had pushed through these cuts affecting disabled people and working people...

*Please don't worry - I have friends who are in a position to lend me money until wages and tax credits start properly, I won't have to go to a food bank or payday loan company. But how many people have friends willing and able to lend them hundreds of pounds for an undefined amount of time? 



Journey to Work Part 4 - I'm finally off ESA!

3/12/2014 09:14:00 am BenefitScroungingScum 5 Comments

After more hours on hold to various DWP departments than I care to think about and several discussions with concerned, expert DWP advisors about whether it would be better for me to do permitted work than full on employment....

I've managed to sign off ESA! Quite why it is such a difficult process is beyond me, the automated systems the DWP are using reduced me to tears, but all the staff I actually spoke to were excellent. This doesn't bode well for the 'digital by default' futureproof benefits planning the DWP are hanging everything on currently.

So having decided I can only face dealing with one benefit department per day, today's task is to try and sort out housing and council tax benefits.

And to try and squash the panic triggered by yesterday's DWP advisor asking me if moving into work was a change of circumstances for DLA. I don't see why it should be given I'm working part time from home in my pyjamas*. But, if that question does trigger the system as a change of circumstances it will also trigger an application for PIP.

There's simply no way I can remain in employment without DLA. There's also no way I can manage to juggle coming off several benefits, applying for several different benefits, deal with the social care implications, actually do my job AND apply for PIP.

So, should this be treated as a change of circumstances and the PIP forms arrive I'll have no choice but go to straight back onto ESA and stop working.

I'd really like to congratulate the government on having spent obscene sums of money on 'welfare reform', terrified disabled people and somehow managed to make it MORE difficult to move into work. As achievements go...that's quite an impressive one..

*frequently smelling of sick, so it's a good job I'm avoiding face to face meetings! 


Journey to Work Part 3 - My First Day - I seem to still be on ESA..

3/10/2014 02:21:00 pm BenefitScroungingScum 6 Comments


Brown Envelopes & Bureaucratic Bullshit (Journey to work, Part 2)

2/24/2014 08:32:00 am BenefitScroungingScum 5 Comments

Two DWP envelopes in the past two days. Nearly gave me a heart attack when I spotted them. The first was what used to be a standard 'rates of benefits will change' letter - but the language and order of information is both intimidating and confusing. It wasn't until I got to page 3 that I realised I didn't have to follow the 'mandatory reconsideration' process outlined on page 1; in fact I don't have to do anything. Good job I've got an LLB/Hons, its only three years training in how to read legalese nonsense that has equipped me to occasionally be able to translate DWP speak.

The second letter was better news - my equipment will be funded by Access to Work. Which is great. Even the expensive bits of it I explained I was highly likely to be unable to use. 'Just try it out' is good advice, apart from the bit where what you're trying out costs hundreds of pounds, isn't the answer and is really being imposed instead of providing support worker support.

As for when I'll know about support worker hours, your guess is as good as mine. The battle over the 20% limit continues. All the guidance read by myself and other disabled people leads us to the same conclusion - the 20% limit is being applied incorrectly. The consistency in the incorrect application by advisors in different locations leads me to speculate that the advisors have been trained to provide the incorrect application, perhaps to limit the costs of Access to Work despite its financial return for the Treasury. Oh, and that small matter of 3.5 years of 'work is always best' rhetoric..

Ah well, my employer and I have only been waiting for this since early January. What's another few weeks when you're waiting to come off benefits and start work?!


The 'Scrounging Scum' to 'hard working, tax credit claiming, socially acceptable scrounging' journey

2/23/2014 10:59:00 am BenefitScroungingScum 2 Comments

First published on Disability Now - AtW: Denying Access to Work

With government rhetoric stressing their keenness to get more disabled people into work you might think that their scheme to support disabled people in employment would be an example of well-oiled machinery.
But when, having got a job, Kaliya Franklin set about getting the support she needs, what she encountered was a confused tangle of red tape and bureaucracy.
I’m very, very lucky to have a potential job with an employer who is willing to bend over backwards to accommodate my fluctuating and unstable condition. Work from home? No problem. Work from bed? No problem either. it’s like the holy grail for people with a fluctuating condition.
Naively we thought that Access To work (ATW) would be a rapid, streamlined process providing all the support we would need to make this unusual employment situation workable.
Access to work is one of the few major success stories in relation to government spending – for each £1 spent by ATW, the treasury gets back £1.48 in income tax and national insurance. It has also been described as the DWP’s best kept secret. Employees and employers like the scheme, but given that the number of ‘new starts’ has been falling since 2010, is Access to work actually helping people to access work?
ATW is intended to provide the support an individual needs to carry out their job, whether that support be in the form of equipment, accessible transport or a support worker. Recently there have been various changes to the provisions ATW can make and in what circumstances. With classic timing, I applied for support just as these changes were taking effect. I wanted to be sure my  package was in place and would provide the support I needed before starting work.
That was a wiser decision than I realised – it took 4 weeks for the ‘equipment assessment’ to happen and now, some 5 weeks on from applying  I have yet to hear what equipment I’ll be granted and whether I have managed to fit within the strange and complex flow chart now used by ATW staff to decide whether someone is allowed support worker hours. Funnily enough, I’ve also yet to start work. Oh, and I can’t tell my employer when I might be starting because I don’t know when ATW will be set up…the best I have is a vague ‘if you haven’t heard in another 10 days call us’.
So far my experience has been disheartening and stressful as well as confusing. ATW is working to updated DWP guidance which limits both the equipment they now provide and introduces a 20% limit to the amount of support worker hours permitted. Each advisor I’ve spoken to at Atw has been consistent in their advice – I can only have a maximum allowance of 20% of my hours worked in support worker hours. However, when I finally managed to track down that official guidance I found the advice given to me by multiple staff members to be wrong. The support I need falls into the category of ‘life skills’ – this means access skills to enable me to carry out a whole task – things like someone to scan documents for me, take me to the post office, or support me when I have to attend meetings elsewhere. The support worker won’t be doing my job, I will, but without that support I may not be able to carry out the job. The official guidance is clear – ‘life skills’ are an enabling support which is a conduit to being able to do the job, and the funding is supposed to be available for as much of this support as an employee needs.
So, not only am I still waiting to hear what equipment I may receive, but also to find out if I can have the 20% proportion of hours worked in support worker hours, even though this is in direct contradiction to the official written guidance.
I mentioned I was lucky to have an understanding employer committed to making the adjustments I need. With a 5 week delay in starting work, and no idea when the actual support offered might be in place, let alone whether that support will be sufficient, it really is fortunate. I can’t imagine a supermarket waiting for someone to start a shelf stacking role would be quite so flexible. Why would they be when there are hundreds of candidates for every job who are able to start immediately?
As for me, I’m 5 weeks into the process and far more disheartened than when I started. It’s impossible to plan properly without knowing what and how much support I’m entitled to. It’s impossible to start work without that entitlement. So, I’m still on benefits. Not in the job that’s mine. I’m far less confident about succeeding in employment than I was to begin with. Access to work should be the stable part of my support, not an additional challenge and barrier to employment.


'Let's Talk About Sex!'

1/05/2014 11:22:00 am BenefitScroungingScum 0 Comments

Speeches from H&SA 'ordinary lives' conference - relationships, trust and 'who do you ask to help you buy an accessible sex toy?!'

H&SA Annual conference : Kaliya Franklin and Linnet Macintyre from Housing Support Alliance on Vimeo.

H&SA Annual conference : Kaliya Franklin and Linnet Macintyre from Housing Support Alliance on Vimeo.