Tuesday, January 24, 2012
TUC Seminar, Kaliya's speech
I also (with his permission) videoed some of Professor Paul Gregg's presentation and will upload that tomorrow. Unfortunately the battery ran out so missed some of his speech
Update 27.01.2012 Thanks to the fabulous Margo Milne we have a transcript of my speech
TUC Seminar, Kaliya’s speech
Chair: It gives me great pleasure to present Kaliya Franklin, who is a prolific blogger and internet campaigner and now report author, representing the views of disabled people and campaigning for their rights. As Richard said we’re very sorry that her colleague Sue Marsh isn’t able to be here, but it’s great that they were both willing and able to be on the platform today, and I’m sure Kaliya will have a huge amount to tell us about her views on the government’s reforms and the incentives that are being phased in to enable or disencourage disabled people back into the workplace and into working. Thank you.
Kaliya: Thank you. I hope you’ll realise the laptop, but we wanted to record this part of the event for those disabled people who can’t be here, so that they can also participate.
I’ve been asked to talk about how the government are creating perverse incentives in the Welfare State, so, for the last 40 years or so, we’ve had what was very much a cross-party political consensus, and public consensus, about improving the lives of disabled people, that we’ve moved away from a presumption of institutional care into community living. But in the last two years, the situation has changed dramatically, and a great deal of that progress has been lost.
In a time of widespread financial austerity, most societies look for a group to demonise, and under the last few years, which started under the Labour government, and intensified when the Coalition came to power, the big demons in society have been benefit claimants, and particularly disabled people. There’s been a move towards blaming the individual for their own failings in not entering the workplace, rather than the understanding that we had some years ago, that there are barriers in society that disabled people can’t cross without significant support, that we should have as of right.
We’ve moved from a position of seeing people contributing to society in a whole variety of ways, whether that’s just from being an active part of their own community, or voluntary work, or providing employment to others, to this very determined focus on full-time paid employment as the only way that people are seen as contributing to society. But at the same time as we’ve seen that move, we’re seeing very much a tightening, a withdrawal, of the things that disabled people rely on to enable us to participate, and it’s a situation that was at best a couple of years ago bordering on crisis, and now we don’t expect it to take long until it falls apart.
One of the important things to note is the difference between what we would describe as “DDA disabled”, so Disability Discrimination Act disabled, and “DLA disabled”. Estimates vary, but there’s between 10 and 20 million people in the UK living with disabilities, long term health conditions, so that covers a whole age range, it’s young people born with disabilities or at the other end of the spectrum people who’ve developed dementia or age-related disabilities.
Disabled people and sick people particularly, we don’t tend to be the most visible members of society, most of us don’t have wheelchairs or white sticks to pinpoint us, many of us have invisible or fluctuating conditions, mental health conditions, mild learning disabilities that are not readily apparent, and one of the big things to note, particularly with the sickness side of things, is that we don’t leave the house very much. This is the first time I’ve been anywhere that isn’t my doctor’s or a hospital appointment since October. The authors of the Spartacus Report, we call it from-bed activism, because the authors of the report all worked on that from our beds or from our sofas. We weren’t able to go out and meet each other. Some of us have never actually spoken to each other in person, but we’ve been able to embrace new media and new technology, so that the disabled community and the sick community can network and link with each other to combine and share our skills in a way that even five years ago we simply wouldn’t have been able to do.
One of the first perverse incentives that’s come about is Clause 52 of the Welfare Reform Bill. Now Clause 52 removes a presumption which was there to protect young people within the welfare system, so if you were under 19, and so severely disabled when you left education that you were unable to work, you were presumed to have National Insurance Contributions, and that also applied to disabled people who became that sick or disabled under the age of 25, had they been in higher education, and it was important for many reasons, probably the most profoundly in the message it sent out to the wider public and community, that disability, by crediting in National Insurance Contributions you were considered to be equal and a participating member of society. And the Government have made a great deal of the fact that a relatively small percentage of young people will be impacted by the removal of this presumption, and that’s because the burden is very deliberately being pushed on to the family by the Government, so if you are the parent of a profoundly disabled young adult, they will no longer qualify for contributory benefit in their own right, they will only qualify if the family qualifies for means-tested benefits.
So at a time where we’ve seen that some of the very sensible recommendations about social care in the Dilnot Report haven’t been implemented, and the understanding from Dilnot that it was benefits such as contributory ESA and Disability Living Allowance that would paper over the gaps in the system between the failings of the NHS and the social care services. Now that’s going to be removed, and we’re going to see families in the situation where they may be completely unable for that disabled adult to remain at home, and equally the young disabled adult is going to very much struggle to move into independent living, which should be their right, they should not have to depend on their family for everything, care, their finances, so that particular concern, and it links into the concerns that carers have, that nobody’s factored in how Carer’s Allowance will work as part of Universal Credit.
We’ve also seen some very deeply deserving decisions by local authorities covering social care in the last couple of years. What perhaps many people weren’t aware of is that social care was being rationed and withdrawn for the last five years of Labour Government. For example, I used to be entitled to a care package, and then I was reassessed, and I’m no longer entitled, so the support that had been in place to help me with the practicalities in day to day life which I needed to remain, so that I stood any chance of ever considering paid employment or part-time voluntary work, was withdrawn, making things vastly more difficult.
Now I’m probably at the higher-functioning end of more severe disability. But what we’re seeing are decisions like one by, I think it was Kensington and Chelsea Council, in the case of Elaine MacDonald, where the local authority had deemed that it’s perfectly acceptable to remove night care from someone who’s not incontinent, and replace that care with incontinence pads that this person would be left in every night, because that covered, from the local authority’s viewpoint, social care provision. We’ve also seen a gentleman in Birmingham, where their local authority tried to reband all the criterias of care, and they wanted to create a new category, called super-critical, for which they would only provide care to people in that. And to give that some sort of context, we’re talking about people who, it’s not safe for them to be left alone, they may choke, they can’t feed themselves, they can’t necessarily swallow properly, they can’t clean up their own waste products, so as a society, what we’re saying is we don’t have enough money so we’re going to leave you lying in your own urine.
One of the things that the government said was a perverse incentive and justified as a reason to halve the Disabled Children’s Tax Credit eligibility was that they said it was perverse that children got more than adults, because once they’re adults, they won’t get it, so let’s take it off them while they’re still children. Now, the Government likes to talk a lot about what’s fair to the public, and what’s fair to the taxpayer, but they’re not very keen to talk about practical impacts of these decisions which the vast majority of the British public will not deem to be acceptable.
Moving on to the decision to get rid of Disability Living Allowance, and replacing it with a new benefit called Personal Independence Payment. The Government tried very hard to sell that, as a justification for the numbers of fraudulent claimants, and have been deeply misleading at many points, particularly over the consultation that they had for disabled people, which was why we felt we had to produce the report Responsible Reform, the Spartacus Report, because the Government very clearly cherry-picked the responses that they wanted, and refused to issue, refused to publish, all the responses, so that we had to use Freedom Of Information Act requests to get them, and although we have requested all the individual responses, we expect that the Government will refuse to provide them, because they are going to say that they can’t analyse them for data protection purposes, and it wouldn’t be cost effective to do so. So they’ve tried to say that the consultation report that we produced was misleading because we only looked at 10%, but what we actually looked at was the group responses, from all the different organisations, the charities, the DPOs, so the 500 responses we were allowed to see actually represented huge numbers of disabled people, because for example one of those responses would have been from Scope, who consulted hundreds of thousands of people.
So the House of Lords have voted that DLA is going to go, and the Government have had to come out and admit that this means that half a million genuinely disabled people, with no suggestion that they’re fraudulent, will lose access to this benefit. Now as we know from Dilnot and from lived experiences of disabled people, DLA is the only thing that is papering over the cracks in the system in any way. For people like me, who’ve had their social care support withdrawn, without the money from Disability Living Allowance I can’t buy in the kind of things that I need to replace that support. The Government have made a great deal about how society should replace that provision. I’m possibly the only person in the country who lives in a community that is a Big Society community. My neighbours take it in turns to bring meals in, they’ll come in if I’m having a bad day and make drinks, or clean the kitchen, but it’s not a sufficient replacement for a social care package to enable me to participate in the wider world or employment, but what it does do, in combination with DLA, is stop me from slipping back further and ending up in a much more critical category, so that the local authority would have no choice but to provide an expensive support package. But if I’m reassessed as not being entitled to Personal Independence Payment, once the impact of the reduction to the 30% average rent to Housing Benefit comes in, I will no longer be able to afford to live where I do, I’ll have no choice but to go to the local authority, and they will have to rehouse me and provide a care package that currently the cost of DLA means they’re getting away with not having to do.
It’s also really important to note that amongst the disabled community the people who are in work are heavily reliant on Disability Living Allowance to meet the extra costs of their disability. Now, we’ve already seen that Access To Work, the criteria for entitlement for equipment that an employer will have to provide is being reduced, rules are being changed so that people are having to respond to reassessments for Access to Work in an amount of time that they simply aren’t capable of dealing with, and there have even been farcical decisions like Jhaspal Dhani, who was told that he was in a senior position at his organisation, so even though it was a DPO that didn’t have any significant funding, they should be made to bear the cost.
Going on to time-limiting of contributory ESA, had the Government actually thought this through and set a means-testing limit for time-limiting that benefit at £26,000, so it was the same as the means-testing cut-off throughout the Welfare Reform Bill, then there might not have been such a strong opposition to it. But means-testing all of this stops at seven and a half thousand pounds, so if you are employed as a full-time shelf-stacker on minimum wage, and your partner has multiple sclerosis or motor neurone disease and is not fit to work and is entirely dependent on you, after one year, regardless of whether their condition improves or not, their contributory ESA will be removed, and this is perhaps one of the most perverse incentives in the Welfare Reform Bill, because the consequences are that either the working partner will have no choice but to drop out of work and the entire family will rely on the benefit system to keep going, or what we’ll see increasingly is families splitting up and being forced to live apart, increasing more welfare dependency.
At the same time as the welfare situation, what we’re seeing is perverse increases in NHS waiting times. There’s already a problem with lack of equipment provision. For example, I have some mobility, so I’m not entitled to a power wheelchair, probably because I’m stubborn, and I insist on the right to retain my mobility within my own home. But without a power wheelchair, and without access to a care package and PA, it prevents me from being able to access the world in a reasonable way, let alone whether I could access employment.
We’ve also seen deeply concerning change in the media coverage of disability and benefits entitlement. This was looked at recently by the Glasgow Media Group, and there’s also been a 75% increase in hate crime targeted at disabled people in the last 12 months. And as disabled campaigners, a lot of the anecdotal reports we receive is that the abuse people hear has altered, so whereas a year ago they might have been an effing spaz when they were screamed at in the street, now they’re an effing benefit scrounging spaz. So we feel that this is very clearly linked to the coverage. We’re also seeing a push to legalise euthanasia at a time when support of welfare is being withdrawn, which means that whatever your beliefs about the rights and wrongs of voluntary euthanasia, people will be forced down that road because they cannot get the financial and practical support that they need.
So essentially what we’re seeing is the perfect storm, which threatens to undo all the progress of the past 40 years. As disabled people, we feel that we’re in a closed pit, where the walls are closing in on us. Everything we rely on for support, and to participate in society, is being made harder and harder to access, at the same time that the conditions pushing us into a model of full-time paid work are becoming more and more punitive. And if we continue down that road, then although it sounds like hyperbole, we expect to see many more deaths linked to these cuts and welfare reform, a vast increase compared to the number there have been already, because disabled and sick people will see that they have no alternative and feel that life is no longer worth living.
Chair: Thank you very much indeed Kaliya for an extremely comprehensive assessment of the possible effect of the Government’s welfare reforms and for sharing very honestly your own experiences and those of other people as well, I think that’s something, it’s all very important to be reminded when we look at the statistics of the individuals that are behind every single one of them.