It is thought that 3 out of 4 people will have some sort of contact with social care support in their lives.  But the current system is already in crisis and this will only get worse as each year there will be more people who need care.  A lot of people are campaigning for lots of things at the moment but despite the fact that so many of us will find we need social care it does not get the public recognition that it should, and that means it can be easy for the politicians to slide the reform of social care down the priority list. It is important to remember that despite the economic crisis the country is four times richer than in 1948 when the NHS was established.  We should be celebrating that people are living longer but we need to recognise that people need more support too. At the moment if I, or someone I love, is born with a disability or acquires one later in life, there is a big risk of falling through a huge hole in the care safety net. This is just one of the reasons why care matters to me and why I want to see a reform of the social care system.

Today we are launching our new campaign – ‘care matters to me’.  We need your support to tell politicians all over the country why care matters to us.  In a few months time, the Government will publish its white paper on social care reform and at the moment, the three main political parties are meeting to discuss the future of care.  Now is the time to make as much noise as possible about social care.

Take action!:

1. Join the campaign on Facebook or Twitter.

2. Spread the word – ask your friends to join the campaign.

3. Email your MP and ask them to tell David Cameron why care matters to you.

4. Read our guide to meeting your MP and download the care matters to me logo.

5. Tell us how your meeting went.

 Anthea Sully, Director.

The report is powerful in its clear articulation of the fears of disabled people of the potential impact the Governments proposals will have on their lives. Not only do the authors point out the difficulties people will experience if the changes go ahead, such as the potentially devastating wait to receive PIP (proposed to be 6 months it is currently 3) but they are also damning of the way in which the consultation process took place. The consultation process did not meet the Government’s own Code of Practice, being two weeks shorter than recommended and taking place over the Christmas holidays. To make matters worse the Welfare Reform Bill was presented to Parliament two days before the consultation ended, meaning that responses could not be taken into account when drafting legislation for PIP.

The figures opposing the reforms are overwhelming, 92% of respondents oppose changing the number of rates of care from 3 to 2 and 87% oppose stopping automatic qualifications to DLA. Thankfully the Government saw sense when it came to the mobility component of DLA and has now backtracked on its plans to abolish this for people in care homes, we can see that 100% of people responding opposed this. In celebrating this news we need to be really careful not to lose sight of the threat posed to peoples well being inherent in the totality of the PIP proposals. All the other proposals remain on the table and it is vital that pressure on the Government is maintained. In the responses to the government’s questions the conclusion is that there has been a failure to take into account the views of disabled people, that the proposals will be less fair and that the impetus for reform is to save money as opposed to enabling people to live the lives they want to lead.

You can read the report, ‘Responsible Reform’ here.

Anthea Sully,
Director.

At the start of the year our annual survey of local authorities revealed the damaging impact that the Emergency Budget and the Comprehensive Spending Review were having on social care in local authorities. Later in the year we surveyed people with a learning disability to find out about people’s standards of living and travel. The additional difficulties people have been experiencing in paying for essentials including food and heating were notable.

There has been a lot of e-campaigning and social media activity this year. Nearly 2,500 actions have been taken as our supporters have emailed their MPs following the shocking BBC Panorama programme about Winterbourne View, written to their local papers, MPs and Chancellor George Osborne. In March we let George Osborne know what we wanted in the budget by delivering 1,600 signatures to 11 Downing Street in our own red budget box.

In early summer Andrew Dilnot made his recommendations for the future of social care funding. It meant that by the time we got to the autumn and the party conferences we had lots to talk to politicians about. In line with our LDC tradition of unusual party conference events, we organised bowling tournaments with Liberal Democrat and Labour MPs and a table tennis tournament with Conservative MPs. This gave people with learning disabilities an opportunity to tell their stories and put their questions directly to MPs. The events also led to a number of other meetings with MPs both at party conferences and in Westminster.

Campaigning makes a real difference – as shown by the recent change of mind by the Department of Work and Pensions about the mobility component of the Disability Living Allowance for people in residential homes. Looking ahead to next year there is a lot of work to do – local authorities are inevitably still going to be making cuts and the Government has said it will bring out a white paper on social care. If we are going to make sure that social care is reformed so that it delivers what people need and is properly funded, we must make an even bigger noise about care in 2012.

It continues to shock us at the LDC that social care is not widely understood or talked about and not a priority in the minds of most politicians. We need to change that – social care matters to all of us – in the new year we will be asking everyone to join in and say ‘care matters to me’!

Anthea Sully, Director

The most important ingredient is more and better funding for adult social care. The current underfunding of social care is well recognised, as is the increase in demand for services as older people are living longer and the number of people with disabilities rises. Without more funding, there can be no hope of meeting the increasing demand for services or of finding the extra money for implementing reforms. Worryingly, recent statistics from the Department of Communities and Local Government show that spending on adult social care has decreased by 1.1% between 2009/10 and 2010/11 and that 40% of local authorities have decreased the amount that they are spending on services for people with learning disabilities. There also needs to be better transparency and openness what happens to this key ingredient, the Government has allocated an extra £7.2 billion for social care over the course of this Parliament, but as the money is not ring fenced, there is no guarantee that this will be spent on social care at all.

Another vital part of the recipe is to ensure that funding is directed into personalised support which allows people to live the lives they want to live and to meet unmet need, particularly the needs of people who may not currently be eligible for care and support. The Government has announced that everyone who needs social care support should be in receipt of a personal budget by 2013, but local authorities need to be careful to ensure that this doesn’t just turn into a tick box exercise. Councils need to make sure that they are offering a range of genuinely personalised services and this extends to looking more broadly at ways that they can become place shapers in their communities so that there is support available within all local amenities and facilities.

There needs to be national eligibility criteria and portable assessments, both ingredients that are called for in the Dilnot Commissions recommendations. These will put an end to the postcode lottery and enable people to move around the country, able to live where they want to live.

And finally on my key ingredients list is that there needs to be better data so that councils can plan. Many councils do not collect information at the moment and unless they have a better idea of what the current and future needs are and the numbers of people with a learning disability in their area, they cannot accurately plan for future demand or establish what kinds of services and support people may want to use.

So those are my key ingredients for social care. Are there others that we have missed?

Anthea Sully, Director of the Learning Disability Coalition

“This weekend demonstrations up and down the country were held to protest against cuts to benefits and services for disabled people. Following the success of the Hardest Hit’s London march in May, last Saturday saw events hosted in cities across the UK, stretching from Edinburgh to Brighton. Whilst each event had its own distinct flavour, the unifying message was one of dismay and anger at the impact of cuts on disabled people.

London’s contribution to the day saw protesters gathered outside City Hall, or on “Boris Johnson’s lawn” as one speaker put it. The crowd was kept entertained with music before a range of passionate speakers took the stage. Kirsten Hearn, Inclusion London’s Chair, opened proceedings with a powerful speech about the local impact of cuts in the Capital and the ongoing demonization of disabled people in some sections of the media.

Other speakers included members of the London Assembly, trade union officials and representatives of disability charities. There was an overwhelming sense of anger at the perceived disparity of treatment by the Government of bankers and of disabled people. Many spoke out in disagreement with the Government’s policy on cuts. As one speaker put it, “reducing work support for disabled people will not cut the deficit”.

Employment support for disabled people was one of the main issues covered by speakers, as well as the proposed changes to Disability Living Allowance (DLA). This point was brought home by an Assembly Member from the Green Party who summed up the importance of DLA, simply stating “many disabled people rely on DLA because being disabled costs more”.

Towards the end of the rally there was a queue of people waiting for the opportunity to share their personal experience with the gathered crowd. Despite the anger and frustration evident in many personal accounts, the rally’s atmosphere was one of unity and a collective voice. Our attention now turns to the Government to see if they will heed the voices of disabled people across the country and lessen the blow of spending cuts for the hardest hit.”

Alexis Camble is campaigns and policy officer for United Response

And how do you challenge a cut when it will have a dramatic impact on someone’s life?

One of the ways councils try to save money is by edging people out of services by ‘tightening’ their eligibility criteria. When we surveyed councils in February this year, as they were setting their budgets, 21% said that they had either raised their eligibility criteria or had held a consultation on this option, as a response to the changes in the Emergency Budget and CSR. We also surveyed people with a learning disability, families and carers and we learned that 33% had been contacted by their council about an increase to eligibility criteria. The Association of Directors of Adult Social Services own research states that in 2007 62% of councils only provided support to people with critical and substantial need and now 82% of councils have tightened there criteria to this level. This is a shocking increase.

Law firm, Irwin Mitchell, has once again led the way in challenging this drastic way of making cuts. They say that the action of the Isle of Wight council in changing eligibility criteria and reassessing over 1,000 people, as part of plans to save £2.6 million over two years from its adult social care budget, fails to have due regard to the need to promote equality for disabled people under equalities legislation and compromises the human rights of disabled people.

Irwin Mitchell has already successfully brought a case against Birmingham City Council who had planned similar changes. Acting on behalf of two men with learning disabilities they have won the right to a challenge in the High Court against the Isle of Wight Council. The two men require 24 hours support, currently provided by their families and a package of care from the council. It is an important step in the right direction that the right to challenge the council’s decision has been won. It is an easy rhetoric to say that funding will be focussed upon those who are most in need. But the way in which this is implemented is very dangerous indeed. It is not sufficient that people only receive a survival level of support in extreme need. As Irwin Mitchell have so rightly exposed, actions such as that taken by the Isle of Wight are nothing less than a serious affront to human rights.

Anthea Sully,
Director of the Learning Disability Coalition

Councils have a duty to consult as well as to carry out an assessment of the impact of any decisions they may make for disabled people. It is interesting that Community Care has managed to elicit the information from councils by using requests made under the Freedom of Information Act. Increasingly, people are discovering the power of ‘FOI’ requests to identify where public bodies are not behaving as they should. The Act gives people the right to ask any public body for all the information they have on any subject. The information then has to be provided within 20 working days unless there is a very good reason.

The information that has been found by Community Care links up with what people have been telling the LDC. And its not only local councils that are failing to consult in acceptable timeframes, nationally the Government is also falling short. The consultation on the future of the Disability Living Allowance, (DLA) and implementation of the Personal Independence Payment (PIP) is a clear example where the timeframe was constricted. This consultation took place from 6th December 2010 to 18th February 2011 (10 weeks), contravening the Government’s own Code of Practice which recommends at least 12 weeks for consultations and longer if the period, as in this instance covers a holiday period. To add insult to injury the Welfare Reform Bill, that introduced PIP, was then introduced to Parliament before the DLA consultation closed and received its first reading in the House of Commons on the 16th of February 2011.

As Community Care points out – if consultation is not carried out appropriately then public bodies may be open to legal challenge. It may feel like a technicality but if consultation is inadequate, then decisions that damage peoples lives can be pushed through. It is vital that Councils and the Government get it right.

Anthea Sully, Director of the Learning Disability Coalition

“So that was a meeting about ‘efficiency targets’, followed by a mad dash in the car to hear about ‘a redirection in the social care budget’, then a train journey with phone calls to keep me informed about the rumour of a ‘significant announcement regarding funding’. It was never meant to be this way! Surely we were meant to spend our time looking at how we could make things better not cheaper! That’s a thought that keeps returning to me.

The background noise seems to increase, with ever more imaginative ways to tell us ‘you will be receiving less money, but we would like you to achieve better things, improve staff terms and conditions, while agreeing that this will move social care forward.’ The temptation is to join in, to use the same language, to talk about new realities and the redesign of service provision. Sometimes (dare I say it out loud?) I’m not so sure that less can equal more!

Anyway, the car has stopped and that looks vaguely like Real Life Option’s Stockton office, so at least I’ll have a cup of tea and maybe no-one will mention funding for an hour. The next two hours are the graduation ceremony for ten people and their supporters who have completed the Making Change Happen course, delivered by Partners in Policymaking. Some of the people have received a service from Real Life Options for ten years and some for only six months.

The office was not like I had ever seen it before. It was covered in streamers, balloons and basically cheery stuff! You had to smile. You had to go and look and read and smile. It was fantastic: stories of Robbie Williams’ concerts, poems freshly written, photographic displays, dreams on paper; and the people who had made them standing proudly by to answer questions. The phone rings and it’s a commissioner’s number, but this afternoon he can wait.

I’m asked to leave while people prepare. Prepare for what?? I’m handed a script and told “there will be a play, say these words, don’t improvise” – a hard task if you have ever met me! I was summoned, I said my lines and they said theirs; the audience of 30 laughed! I was booed, they laughed some more! It’s been a long (but not very) time since I was booed by thirty people. There were support workers in wigs, male team leaders in skirts, directors of operations in…well, let’s say it was different!

People told stories, received certificates, predicted the future and smiled; most of the time while standing up in front of 30 people. This didn’t strike me as odd at first, that’s what I do. That’s why Real Life Options pay me, I suppose. However, the graduates had never done this before. The people who worked as support workers, team leaders and administration officers had never done this before; and I know we don’t pay them enough, nor do we pay them as public speakers. It was exceptional. It was bloody brilliant! It really was.

The phone went again – the same commissioner, the same question. Had I “considered how Real Life Options may support a twenty percent redirection of the budget allocation……”; I almost couldn’t help myself, I was quickly back in my stride. ”Well, there are a series of spans of control initiatives that, when aligned with our review of back office capacity and a clear investment strategy in assistive and personal technology options, should realise…”. I would love to say my voice trailed away for a few seconds and then I came back strongly with “No, I haven’t! Have you considered the effect that swingeing cuts can have in an individual’s life and the complete short-sightedness of your actions”. Maybe even, in my head, I went on and delivered the most impassioned speech to do with social care and learning disabilities that has ever been spoken. I did neither – thankfully.

What I did do was simply say “Why don’t we meet and have a cuppa?” We did. We talked. I told him about my day at Making Change Happen. He told me about the budget cut he faced and how “in an ideal world” it wouldn’t happen. As people who are friendly, we agreed that our different positions on funding shouldn’t become the issue. He understands that I cannot accept the ‘efficiency’ myth, that less never leads to more and that, as friends, I simply can’t agree with a reduction if that reduction stops days like Making Change Happen from being the norm. I understand that on particular days he genuinely believes that things like Making Change Happen are ‘added extras’, that they could be “redirected concerning funding” and that safety was the ‘offering’.

Well, as I drove away, I’m feeling a little bit better and a little bit stronger because, despite it all, things can be brilliant. We don’t have to scream and shout, but equally we don’t have to accept that it’s inevitable. My organisation is full of real genuine talent. The people we support are exceptional and talented. Together we will make sure that these skills and talents are not simply focused on the “new realities”, but on making sure that we never lose sight of the fact that days like “Making Change Happen” are the front line and must be protected. How empty a boast would ‘we keep people safe’ be, if they never went to Robbie Williams or had that dream?

So as I dash off in the car to find a train to take me to the place where ‘realignment of needs and expectations’ needs to take place, I am pretty sure my starting point is “why?”, “no!” or “are you sure?” I’m very sure that our imagination and our talents need to remain focused on days like Making Change Happen and not on “can this be done cheaper?” It is possible to save money while investing. It appears everyone but social care knows this. The confidence, skills and friendships that were gained on that course will save more money in the long term than any clever wheeze or unique selling point that you or I ever come up with. Anyway I’m off now. I loved the boos! Chief Executives should be booed more often!”

Brian Hutchinson
Chief Executive, Real Life Options

Falling standards of living are coming at a time when the Government is making cuts to social care support and welfare support. With Parliament in recess for the summer, and MPs back in their constituencies, it is vital that they don’t ignore the crisis in social care.

You can play your part in reminding your MP of the social care crisis and the importance of resolving these issues by following the link on our website to write to your local paper. By filling in the details on our website, you can send an editable letter via email to newspapers in your local area calling for your MP to take the time to consider how to end the crisis in social care.

Anthea Sully, Director of the Learning Disability Coalition

But recently the way in which the Government itself uses statistics seems to have taken a darker turn. We are members of the Disability Benefits Consortium and together with the other members have raised concerns, particularly about the DWP who, when revealing statistics on assessments for Employment and Support Allowance, highlight the people whose applications failed – implying high levels of fraud and unnecessary claims.

But this is not the whole story at all. What is not said is that eligibility criteria for this benefit are set incredibly high and there are problems with the assessment meaning that many people are declared fit for work when they have a significant level of impairment. And nearly four out of 10 appeals against the original decision are successful – if the person appealing has some representation more appeals are successful.

The release of statistics in this way would not be so concerning if it didn’t feed the tabloid media’s negative narrative of ‘benefits scroungers’. There is a follow on impact on public perception of disability and disabled people. And yet the Convention on the Rights of Persons with Disabilities, states that the Government has a duty to protect the dignity of disabled people.

Some MPs have recognised the problem. For example, Liberal Democrat MP Stephen Lloyd has said that he has repeatedly demanded “that ministers and the DWP use appropriate language for people who are on benefits.” He observes that “the phrases ‘benefit cheats’ and ‘scroungers’ – while we are trying to support people with disabilities back into work – are inappropriate.”

If the public are getting such negative messages about people who receive benefits it is hard to see how this will improve the chances of people with a learning disability getting a job. Even more dangerously pushing such messages can lead to abuse and hate crime. So whilst statistics can be very powerful lets not take them at face value and ask what the people using them are looking to achieve.

Anthea Sully, Director of the Learning Disability Coalition