Care matters to all of us

Care Matters to ALL of us

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.

I support the ‘spartacus’ report

Monday 9th January has seen a media storm break around the excellent “spartacus report”, Responsible Reform, which examines the Governments proposals to reform Disability Living Allowance DLA into Personal Independence Payment PIP. The report has been entirely written, researched, funded and supported by sick and disabled people, who came together through social media. The reports authors were able to discover the results of the PIP consultation by utilising the Freedom of Information Act.

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.

Happy Christmas and thank you to all our supporters

This is our last blog for 2011 so it feels like a good opportunity to look back over some of the events of the last year. The LDC has spent 2011 trying to look in two directions at once – making the case for better funding at a national government level as well as addressing the impact of cuts on local support by making calls to ‘protect the frontline’. In the spring over 1,500 ‘protect the frontline’ postcards were delivered by people with learning disabilities to councillors as they were setting their budgets. In some places, large groups came together to protest and several hit the headlines in their local news.

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

What are they key ingredients for social care?

As my friends know, baking is not one of my skills. I watched The Great British Bake Off with a mixture of terror imagining myself into such a situation and admiration for the contestants. Of course when creating anything it is vital to get the ingredients right. I feel much more confident when it comes to thinking about what the key ingredients should be for excellent social care for people with a learning disability. As the Department of Health’s consultation on the Dilnot Commission’s proposals comes to and end and we begin to look forward to the publication of the white paper on social care in the spring, we at the LDC have been looking at which key ingredients should be included and what should be the recipe.

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

Hardest Hit rally outside London’s iconic City Hall

Alexis Camble is a campaigns and policy officer for United Response, one of the founding members of the Learning Disability Coalition. Here she tells us about her experience of participating in the Hardest Hit marches which took place all over the country this weekend.

“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

Isle of Wight taken to court over its decision to raise eligibility criteria

So when is a cut a cut?

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

Will councils ever get consultation right?

Community Care has been investigating the way in which councils have been consulting on cuts to adult care and believes that one in 10 councils may have breached equality laws. Apparently, ten per cent of councils went ahead with proposed changes to adult care services on the day they finished consulting on the changes and incredibly in some cases, even before the consultation had finished.

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