CarerWatch Evidence to 21st Century Consultation

Who we are


Carer Watch are a campaign group for carers across the UK run by independent, unpaid carers. We found one another on the web and decided to join together to make ourselves heard.

Carer Watch have members who are sick, disabled and carers. We network widely, and you can learn all about us here –

As you can see we ran two General Election campaigns with good Cross Party support regarding carers issues (1), and also issues regarding ESA (2).

Our current campaign to protect Disability Benefits at – is receiving very wide support from many organizations and individuals including RADAR and Carers UK.

We have been consulting fully on our website about the 21st Century Welfare consultation for some months now and you are welcome to see all our discussions (3).

This is the evidence that our members want to submit to the 21st Century Welfare consultation

1. What steps should the Government consider to reduce the cost of the welfare system and reduce welfare dependency and poverty?

1.1 This consultation focuses on work as the route out of poverty. The government should understand that work is not necessarily always going to be an option for people with serious and enduring illness or disability and for many 24/7 carers. These people who face extreme barriers to work seem to have been forgotten in this consultation or shoe horned in to a one-size fits all approach.

1.2 Of course we want the aspiration of work to be open to disabled people and carers but with rising unemployment coupled with cuts to social care support services, realistically how many will find work and how soon? We are concerned that the most severely and enduringly ill people will be subject to threats and sanctions for not finding work and have incomes reduced as a result.

1.3 They are members of the community and entitled to expect support from the state and the government needs to acknowledge this and make it clear that they will still receive support and it will be willingly given. They must not be put under undue pressure or demonised by government policy. Disabled people and carers contribute to society in many ways including paying taxes such as VAT. Please stop endlessly separating them and contrasting them with the rest of the community with statements like “”increase fairness between recipients and the taxpayer”. This demonising has to stop.

1.4 Disability has moved on and the new liberated thinking is that no one is now disabled but differently abled. This means everyone should be respected and able to work if they want to. Help should always be there to help any one with any disability to work.

1.5 So there is no longer a ‘test’ that can determine if someone is fit for work. Everyone is fit for work. Blaming the WCA test is pointless. It just does what it says on the tin and finds everyone fit for work.

1.6 This has confused things because unfortunately sickness, illness, disability, 24/7 caring has not actually been abolished which is what ESA seems to assume. There are many people who still face enormous barriers to work.

1.7 In this situation what people with disability need is control over their options and choices. They need a safe place where they can move on, where they can get back to work help if they want it and where they will not face the anxiety of pressure and sanctions if they can’t find work or don’t feel able to work. ESA does not provide this. ESA only provides the support group where people are written off and a work ready activity group where people come under pressure of sanctions.

1.8 ESA needs to be redesigned with a safe place for people to have a go, take risks, get help but not be pressurised. Disability thinking has moved on and ESA – which could be a very positive and productive response to these changes – is being ruined by the mistaken response of pressurising severely disabled people.

5. Has the Government identified the right set of principles to use to guide reform?

5.1   No. These principles apply to people who are fit for work. One size does not fit all. These principles do not address the situation of people with severe and enduring illness and disability or 24/7 carers. There is no simple ‘test’ that can decide if these people are fit for work.

5.2 There can be no simple fit for work ‘test’ because we now think of disability in a new way. No one is written off. Everyone should always have the option of working and support must always be provided to help them if they choose to try. However, this new great aim of extending opportunities to everyone should not be confused with the idea that sickness and 24/7 caring have now been abolished and work is a realistic option for everyone.

5.3 People facing great difficulty should not be continually pressurised in to working. If they decide that they cannot work at the moment or they are unsuccessful in finding and keeping work they should still receive unconditional support from the community without being made to feel guilty. The problems they face in working are extremely complex and they need to make these decisions for themselves. They need to control their own lives. All forms of pressure may cause them great anxiety and make them more ill and no sanctions or ‘conditionality’ should be applied to them.

5.4 These people seem to have been forgotten in these principles. One size does not fit all.

6. Would an approach along the lines of the models set out in chapter 3 improve work incentives and hence help the Government to reduce costs and tackle welfare dependency and poverty? Which elements would be most successful? What other approaches should the Government consider?

6.1 It is disappointing that no mention is made in these models of DLA

6.2 DLA is an essential benefit that was specifically designed to provide financial support towards the extra costs incurred by people living with a disability.  DLA payments have enabled hundreds of thousands of disabled people to maintain a degree of independence and quality of life that would have otherwise been lost to them. Disabled people need DLA to enable them to work, to enable them to look for work and to enable them to live without work.

6.3 One of our members describes how DLA is essential to enable her to work thus – further examples (9) ……


I am a disabled person, I work but if it was not for my DLA I would not be able to. It enables me to have personal carers from social services who help me to be up, showered and dressed and breakfasted so I can get to work on time. It enables me to have a car that  I need for my job.

DLA also helps me to have extra heating in my home which I need because of my condition, it helps with extra washing costs, delivery of my shopping, ready meals as I am unable to prepare my own, my carers travel costs, the person that cleans for me and someone to maintain my garden etc.

Social services are charging more and more for the services they provide meaning my DLA is not being used for things it was originally intended for when it was introduced – the original concept was for it to cover the extra living costs of being disabled – not tipping it up to pay for care costs – which were not charged for at its inception. Some authorities still do not charge for care but more and more are being squeezed by cuts and are making people use the DLA to pay for care.

If all DLA goes to costs of personal care how do we pay for ready meals, extra heating, washing, cleaning, someone to cut the grass etc?

DLA enables a lot of us to work, if it goes I will be unable to carry on working. If the budget were passed to the local authority I would not be able to carry on working as there would be nothing to go towards the other costs – such as work clothes, lunch for work etc.

The cuts are already hitting. I work for the local authority and am on notice for redundancy for the second time this year. I will be unlikely to get another job due to my disability.


6.4 Because Middle and Higher rate DLA are both also passport benefits to enable family members to claim Carers Allowance, removing or reducing DLA will not only have an enormous financial impact on disabled people it will also impact on their carers – a double blow which will especially hit hard those families on the poverty line.

6.5 It is essential that DLA be protected.

7. Do you think we should increase the obligations on benefit claimants who can work to take the steps necessary to seek and enter work?

7.1 These descriptions of  ‘conditionality’ are completely inappropriate for people with enduring disability or 24/7 carers. Conditionality for them is cruel and counter productive – it causes stress and anxiety – makes people more ill and less inclined to take risks. What does more pressure add to their situation? The assumption that they have to find a way to work is cruel. Extra pressure can destabilise them with disastrous and expensive consequences.

7.2   This paper has been written with fit people in mind and disabled people are being shoe horned in. Severely disabled people need a safe place to have a go at working but a place where they feel safe from undue pressure if it doesn’t work. The design of the two ESA groups in to ‘support’ and ‘work ready activity’ does not provide this safe place for enduringly disabled people.  Neither group provides the right environment for long-term sick or disabled people. One group writes them off and the other group is too pressurised.

7.3 Please design another group where they can have back to work help on request but are not pressurised with conditionality.



8. Do you think that we should have a system of conditionality, which aims to maximise the amount of work a person does, consistent with their personal circumstances?

8.1 For people with disability or carers – a few hours work a week may be therapeutic and any more hours may be dangerous. Certainly in the case of schizophrenia this is often true.

8.2   Supported permitted work was designed for this situation and it is essential to continue this option. Endless pressure to work more and more is cruel. This paper seems to be designed for fit people. People with disability have been subsumed in to the model for fit people.

10. The Government is committed to delivering more affordable homes. How could reform best be implemented to ensure providers can continue to deliver the new homes we need and maintain the existing affordable homes?

10.1 Please do not reduce housing benefit for disabled people and their carers. Please think about the stress and anxiety and unintended consequences of forcing disabled people and their carers out of their homes

10.2      Will you understand how destabilising this would be to people who rely on

Local social and caring networks that may take a long time to build up. Unfortunately attacks on disabled people are far too frequent and they benefit from a safe

Neighbour-hood, which in our society may mean a more expensive neighbourhood.

12. Is there anything else you would like to tell us about the proposals in this document?

12.1 Carer Watch members are outraged that the government has failed to address the issues surrounding carers benefits in this 21st Century Welfare paper. We are astounded that no discussion about said benefits even takes place.

12.2 Carer Watch does not believe there is a place for carers in any of the proposed models for reform mentioned in this paper.     

12.3 We believe that carer’s valuable social input should be recognised by keeping carer benefits separate from the rest of the benefit system.

12.4 Carers have to provide a minimum of 35 hours a week care in order to qualify for Carers Allowance; care that would otherwise have to be provided by state-funded social care staff at a considerably higher cost to the taxpayer.

12.5 Put simply, without carers our NHS and social care system would collapse.

12.6 Despite warm words from politicians praising the amazing work that carers do, the reality is that the government does not value carers or caring. Carers Allowance is the lowest earnings replacement benefit at just £53.10 a week.

12.7   A study by Carers UK (5) shows that three quarters of carers struggle to pay essential bills and more than half of them are in debt. Delaying dealing with carer benefits will impose further hardship on present and future carers.

12.8 Recent research by The Princess Royal Trust for carers showed results wherein many carers’ battle poverty and depression (6)

12.9 Carer Watch find it deeply offensive that the recent consultation by the Department of Health, Refresh of the Carers Strategy (7) ruled out the discussion of carers’ finances, as it would be addressed in this paper. “The Government recognises that the issue of carers’ benefits is important and will consider this area separately under plans to simplify and modernise the benefit system.” Therefore we were appalled and angry that once again carers have been ignored.

12.10 Since the Coalition government came to power there have been repeated requests asking their intentions towards Carers Allowance (8). All have been met with a wall of silence.

That silence needs be broken now and carers demand to be informed as to the Coalition governments’ plans regarding Carers Allowance.


  1. General election pledge for carers –


2.ESA –

3. Carer Watch discussion board

4.Testimonies –

5. Carers UK –  

6. PRTC research

7.  Refreshing the national Carers Strategy – call for evidence

 8.   Carer Watch  – Family carers are a necessity –…-carers-are-a-necessity/#more-606

9.  Testimonies –

10.   Support from individuals – and

Support from others re: Disability Benefits



Carers UK

Muscular Dystrophy Campaign

The Princess Royal Trust for carers and Crossroads Care

Alan Wheatley – Green Party of England and Wales Spokesperson on Disability and Social Care services

Professor Peter Beresford OBE – Chair, Shaping our Lives

Geoff Finisher – Campaigns Officer, Independent Living

Mark Shrimpton (personal capacity) from RADAR

The National Autistic Society

National Pensioners Society

Prof Jonathan Rutherford –editor Soundings

Jan Cole – Asperser, East Anglia

Anne Beg – Chair of the Works and Pensions

Anne Kane, Policy Manager  – Inclusion London

Elisabeth Luedemann-Ravit – Camphill Community

Tony Wright – Rethink, voluntary support group Seven Oaks Kent

Benefits and Work

Richard Excell – Trades Union Congress

Alexandra Kemp – Chief Executive, West Norfolk Women and Carers’ Pensions network

Peter Fisher – President NHS Consultants Association

Bob Williams-Findlay, MA

Neil Coyle – Director of Policy, Disability Alliance

Bury Autistic Parents Society

2 Responses to “CarerWatch Evidence to 21st Century Consultation”

  1. Carer / Cuts Cuts Cuts Says:

    […] The Coalition is carrying out a consultation on the welfare reforms called the 21st Century Consultation and CarerWatch has submitted evidence here […]

  2. Campaign to protect Disability Benefits « Carer Watch's Blog Says:

    […] Carer Watch response to 21st Century Welfare reform […]

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