Carer’s Allowance earnings rules prevent two thirds of parent carers from taking on more paid work, our new polling shows.
815 parent carers responded to our online poll:
36% said they had turned down additional hours or pay because of the Carer’s Allowance earnings limit.
31% said they had reduced or stopped work.
A further 29% were not currently in paid work, and just 4% said the earnings limit had not affected a decision about paid work.
Carer’s Allowance is currently worth £86.45 a week. But carers can lose their entire payment if their earnings go above the weekly earnings limit of £204. This “cliff edge” discourages parent carers from taking on additional hours or increasing their earnings, even when they are able to work more.
One parent told us: “Gradual reduction would be much better than the immediate stop. Going over by a few pound isn’t worth losing the whole Carer’s Allowance.”
Another explained the difficulty of balancing paid work with the changing needs of their disabled child: “My daughter has poor health. When she is well or in school I could work more, and then less other times.”
Make Carer’s Allowance work better for working carers
The findings come as Contact responds to the government’s call for evidence on the future of Carer’s Allowance.
In our response, we are calling for the cliff edge to be replaced by a gradual earnings taper. This would mean Carer’s Allowance reduces gradually as earnings increase rather than disappearing altogether. In a separate indicative poll of 45 parent carers, 84% supported the introduction of an earnings taper.
Our response also calls for a clearer and more predictable system for calculating fluctuating earnings. Parent carers’ ability to work can change significantly depending on their disabled child’s health, whether they are able to attend school, and the availability of suitable care. The current rules make it difficult for families to know whether taking on extra hours will affect their Carer’s Allowance.
In another indicative poll, 70% of 62 respondents proposed averaging earnings over a 16-week period. However, Contact is calling on the government to model different options. It should test these with carers before deciding how a new system should work.
We also want the Department for Work and Pensions (DWP) to make greater use of real-time earnings information to reduce the burden on carers of reporting changes and the risk of overpayments. Parents told us just how difficult the current system can be to navigate. One said: “There is no calculator online either – it’s horrendous to calculate the implications of work, pensions, childcare etc.”
Contact is calling for clear examples and an online calculator. Carers should be able to see in advance how changing their hours or earnings would affect their Carer’s Allowance.
Our key asks
We want the government to use its review of Carer’s Allowance to create a system that gives carers greater financial security and supports those who want to remain in, return to or increase paid work.
We are calling for:
The current earnings cliff edge to be replaced with a gradual taper, with no carer left worse off.
A clear and predictable approach to averaging fluctuating earnings.
Greater use of real-time earnings information to reduce overpayments and the burden on carers.
Clearer information, worked examples and an online earnings calculator.
Changes to Carer’s Allowance to work properly alongside Universal Credit, including an increase in the carer element and a dedicated work allowance for carers.
An increase in the level of Carer’s Allowance to better recognise the financial impact of providing substantial unpaid care.
The 21-hour study rule to be removed so carers are not forced to choose between education and Carer’s Allowance.
The government has an opportunity to make Carer’s Allowance fairer
Derek Sinclair at Contact, said:
“Parent carers should not have to worry that taking on a few extra hours at work could suddenly leave them without their Carer’s Allowance.
“Our polling shows that this isn’t just a problem with complicated benefit rules. The current cliff edge is affecting real decisions about work. Two thirds of parent carers who responded told us they had turned down extra hours or pay, or reduced or stopped work.
“The government has an opportunity to make Carer’s Allowance simpler, fairer and more supportive of carers who want paid work. Replacing the cliff edge with a gradual taper and making earnings rules more predictable would be an important step forward.”
The new Prime Minister Andy Burnham has appointed a new ministerial team. Some familiar faces appear likely to continue in areas that matter to families.
Here’s who we’ll be working with and what we’ll be asking them to prioritise.
Department for Education
The Department for Education (DfE) will continue to lead work on (SEND), school inclusion and children’s social care.
Minister of State Georgia Gould is widely expected to continue leading the government’s work to improve the SEND system. This would provide valuable continuity as the government takes forward the proposals set out in its SEND White Paper.
Josh MacAlister MP has also been reappointed to the department. We expect him to continue leading work on children’s social care.
Continuity has its advantages. Ministers who have already engaged with stakeholders have a head start in understanding the challenges facing disabled children and their families.
However, there is also much more to do.
Contact has consistently called for disabled children’s social care to receive greater attention. While progress has been made in other areas of children’s social care, disabled children have too often been overlooked.
The Department of Health and Social Care has a vital role to play in improving support for disabled children and young people, particularly those with complex health needs.
We’ll be looking to build relationships with the new ministerial team and continue pressing for:
Better access to children’s continuing care.
Shorter waits for therapies and community health services.
Stronger partnership working between health, education and social care.
We also want disabled children’s needs to be fully reflected in future NHS policy not just an add on.
Department for Work and Pensions
Sir Stephen Timms continues as Minister for Social Security and Disability.
We’ll continue working constructively with ministers to ensure disabled children, young people and parent carers receive the financial support they need.
Ministry of Justice
The Ministry of Justice has seen a change in leadership. We are grateful for outgoing Baroness Levitt’s leadership in bringing together ministers, officials, financial institutions, charities and parent carers to explore solutions to the Child Trust Fund issue.
Sarah Sackman KC MP remains a Justice Minister. She has already engaged with Contact and parent campaigner Andrew Turner on our Child Trust Fund campaign. We have already written to Ms Sackman to emphasise the importance of maintaining the campaign’s momentum. We hope the new ministerial team will build on progress so families can finally see the changes they have been campaigning for.
What happens next?
Over the coming weeks, Contact will continue building relationships with ministers across government as portfolios are confirmed. As the new government settles in, we’ll be watching closely for:
Confirmation of junior minister portfolios.
Early engagement with disabled children, young people and family organisations.
The government’s response to the Law Commission’s recommendations on disabled children’s social care.
Progress on Child Trust Fund and Junior ISA access.
How the Government takes forward the proposals in the SEND White Paper.
The Government’s response to the disability benefits and carers’ benefits reviews.
A change of ministers always brings fresh opportunities, but lasting change depends on sustained commitment.
Over the coming months, we’ll continue working constructively with ministers, officials, parliamentarians and partners. We’ll also continue creating opportunities for families to share their experiences directly with government, the media and in Parliament. It’s vital that disabled children, young people and parent carers are at the heart of decisions that affect their lives.
Featured image photo credit: www.number10.gov.uk
The government is consulting on proposals to improve Carer’s Allowance, the main benefit for carers.
The Carer’s Allowance call for evidence is particularly looking at whether to introduce an earnings taper, alongside changes to rules that cap how many hours a claimant can work.
The government says that Carer’s Allowance has become outdated and does not reflect modern work and care patterns. It was first introduced half a century ago.
We have long called for the government to review the Carer’s Allowance earnings cliff-edge. Carer’s Allowance rules mean carers lose the entirety of their financial support if they earn even one penny too much.
The action plan aims to improve the lives of unpaid carers. The plan concentrates on three themes: recognising the role unpaid carers play; ensuring they can access the support they need; and helping them to reach their full potential.
Andy Burnham MP takes office today, becoming the next Prime Minster. Families across the UK will be hoping that improving support for disabled children and young people becomes an early priority.
Drawing on the experiences of the hundreds of thousands of families Contact supports each year, we know parents want practical changes that make everyday life easier, reduce unnecessary stress and end the constant battles many face to get the support they need. There are many challenges ahead, but there are also opportunities to make meaningful progress from day one.
“The first 100 days of a new government set the tone for what follows. Families with disabled children aren’t asking for special treatment. They’re asking for practical changes that remove unnecessary barriers and give their children the opportunity to thrive. These three actions would make a real difference to thousands of families across the country.”
Contact CEO Anna Bird
Here are three opportunities we believe should be at the heart of Mr Burnham’s first 100 days.
Unlock Child Trust Funds and Junior ISAs for disabled young people
Around 80,000 disabled young people who lack the mental capacity to manage their own finances are unable to access savings held in Child Trust Funds and Junior ISAs because of an outdated, costly and lengthy court process.
There is now real momentum behind finding a solution. Baroness Levitt recently brought together ministers, financial services providers, charities and parent carers to explore practical UK-wide options. We welcome that commitment. We urge the government to build on this work so disabled young people can finally access money that belongs to them.
The solution we are championing could unlock more than £210 million belonging to disabled young people. And by building on existing industry processes, it avoids creating significant additional costs for government.
Create a fairer, simpler social care system for disabled children
Too many parent carers tell us that asking for help feels like a battle. Families often have to fight for basic support, repeat their stories time and again, and reach crisis point before help is available. Some families even tell us they feel blamed simply for asking for the support their child is entitled to.
The Law Commission has already set out clear recommendations to modernise disabled children’s social care law in England. Implementing these recommendations would create a simpler, fairer and kinder system, giving families greater confidence that support will be available when they need it, preventing crises and reducing the stigma that too often surrounds asking for help.
Build trust in SEND reforms by listening to families
The SEND White Paper in England presents an opportunity to improve support, but many families remain worried about the proposals. Contact has been working with parent carers to understand what needs to change. Families consistently tell us they want confidence that the support promised to their child will actually be delivered.
As the proposals are developed, we urge Ministers and officials to listen carefully to families. They must ensure that support set out in Individual Support Plans is legally enforceable. There should be clear rights of appeal when support is not provided.
Children and families need a SEND system that builds trust, strengthens accountability and improves outcomes.
Looking ahead
These three opportunities are practical, achievable and would make a real difference to disabled children and their families. They should also mark the beginning of a longer-term commitment to building a more secure future.
By listening to families, Mr Burnham and his ministerial team have an opportunity to create a fairer, kinder and more inclusive system that gives every disabled child and young person the chance to thrive.
Contact stands ready to work constructively with the new government, helping ensure parent carers have meaningful opportunities to share their experiences and shape the policies and laws that affect their families.
The Timms review into PIP’s steering group has published its interim report, which ultimately finds that the disability benefit is “highly-valued” but “no longer fit-for-purpose”.
The report says that “many disabled people speak powerfully and negatively of the process of applying for PIP, describing it as “dehumanising”, “soul destroying”, and “degrading”.” More than 90% of respondents found the experience of claiming PIP to be negative.
The report backs up our submitted evidence that the system does not reflect the experience of people with fluctuating conditions. As a result, “PIP functional assessment does not always fully reflect real world need.” The system is also difficult to navigate for people advocating on their own behalf.
However the financial support offered through PIP to meet the genuine additional cost of disability is valued and necessary. Going forward, we urge the government to ensure that remains.
Contact’s view on the interim report
Derek Sinclair, our Family Finance Adviser, said:
“We agree that the current PIP assessment process is not fit for purpose and needs changing. Families tell us that the current process is dehumanising and stressful. It has clearly created low levels of trust in the fairness of the PIP system. We want to see PIP assessments replaced by a new process that treats disabled young people with fairness and dignity.
“However alongside improving the PIP assessment process it’s vital that in moving forward, the Timms Review acknowledges the need to continue providing financial support to all of those facing additional disability-related costs and does not seek to restrict spending on PIP.
“Much of the discussion around PIP is framed around rising claimant numbers and expenditure. However, the country has only recently emerged from a global pandemic and associated public health crisis, alongside rising poverty and a cost-of-living crisis. During this period many disabled people and carers have experienced significant deterioration in their physical and mental health. Meanwhile, demand for already-stretched health and social care services has increased. The solution to rising levels of ill-health should focus on tackling the root causes of poor health and poverty, rather than restricting access to disability benefits.
“We believe any eventual reforms of PIP arising from the Timms Review must be rooted in the real experiences of disabled people and their families and recognise the genuine additional costs associated with disability. Families need a system that supports participation and independence, treats disabled people with respect, and provides security rather than fear and uncertainty.”
Contact’s calls for change
We are calling for:
A more person-centred assessment process that properly reflects people’s real day-to-day experiences.
Better recognition of mental health conditions, neurodiversity, fluctuating conditions and the impact of supervision and night-time care.
Greater flexibility and accessibility in assessments, including giving claimants choice over face-to-face, telephone, video or paper-based assessments.
Fewer unnecessary reassessments for people with lifelong conditions unlikely to improve.
Improved training and understanding among assessors.
More detailed and transparent decision-making.
Properly funded advice and advocacy services to help families navigate the system.
Stronger safeguards to ensure disabled people are treated with dignity and respect throughout the process.
The public narrative must stop framing disability benefits as a barrier to work. Many disabled young people rely on PIP to access education, training, volunteering and employment opportunities.
The Timms review is expected to publish its final report in the autumn.
Contact is cautioning against reducing financial support for severely disabled young people to address the rising numbers of young people out of work.
The independent Milburn Review’s interim report, published today, has revealed one million young people not in education, employment or training (NEET). Alongside that the report highlights increasing numbers of young people receiving health and disability-related benefits. This includes the Universal Credit health element.
The report argues that too many young people are being left without the right support to move towards education or employment where appropriate. Wider barriers facing young people include poor mental health support, school absence, lack of suitable jobs and difficulties during transition to adulthood.
Importantly, the report does not currently recommend removing the Universal Credit health element from disabled young people under 22. However, the review does discuss concerns about young people becoming trapped out of work. It suggests that the government should look further at more how disabled young people can be better supported into employment, including the possibility of expecting all but the most severely disabled Universal Credit claimants to take part in “support conversations” with DWP staff.
It is expected to continue looking at the benefits system as part of its final recommendations later this year. Contact will continue to campaign against any proposal that the health element be removed for under 22s.
Una Summerson, Head of Policy and Public Affairs at Contact, says:
“Many disabled young people receiving the Universal Credit health element are not simply ‘economically inactive’. Many are already in education, life-skills programmes, volunteering, social care provision or supported work. All while managing significant disabilities and health conditions. Contact is concerned that current data fails to properly recognise these forms of participation. As a result severely disabled young people risk being wrongly drawn into policies aimed at reducing NEET figures.
“We urge the Milburn Review not to unintentionally push severely disabled young people further away from education and employment by reducing the financial support that helps them participate. For many families, the transition from child to adult benefits already creates a substantial financial cliff edge. This is despite no reduction in care needs. Further cuts risk pushing disabled young people deeper into poverty, while shifting additional pressure and costs onto family carers and overstretched public services.”
What Contact wants to see
Contact supports better opportunities and personalised employment support for disabled young people who can and want to work.
Ensuring disabled young people can stay in education would be one of the best ways of assisting them into employment. But the existing rules mean that some disabled young people cannot claim Universal Credit if they remain in education. This is counter-productive, leading to some disabled young people abandoning education. These rules need to be revised.
Need advice or support?
Many families may feel worried by some of the discussion around disability benefits and economic inactivity. We want to reassure families that the report announces no immediate changes to benefits.
The review is led by Minister for Social Security and Disability Sir Stephen Timms. It’s looking at how PIP works, who qualifies, and whether the current system is fair and effective for disabled people.
Contact has submitted evidence to the review highlighting serious concerns about the current PIP assessment process and the growing financial pressures facing families with disabled young people.
Why this matters for families
PIP helps disabled adults with the extra costs of disability, including transport, equipment, support needs and everyday living costs. It can also act as a gateway to other vital support, such carers benefits, Blue Badges and Motability vehicles.
Many families already face a significant financial cliff-edge when a disabled young person moves from childhood benefits into adulthood. So it is vital that PIP helps families meet the real extra costs of disability and supports disabled people to live ordinary lives with dignity, independence and security.
What we said in our submission
In our submission, we stressed that:
PIP must remain a cash benefit.
The current assessment process is causing distress and mistrust among claimants.
The current system does not properly reflect the experiences of people with mental health conditions, learning disabilities, autism or fluctuating conditions.
Families often experience inaccessible processes, poor communication and inaccurate assessments.
Disabled people should not be demonised in public debate about claiming disability benefits.
“The process leaves families traumatised”
Families contacting our helpline regularly describe the PIP assessment process as exhausting, stressful and adversarial.
We submitted evidence to the review of parent carers reporting:
Assessors who lack understanding of their child’s condition and their needs.
Reports containing inaccuracies.
Assessments failing to reflect fluctuating conditions or hidden disabilities.
Severe anxiety linked to attending face to face assessments.
We also highlighted the extremely high success rate for PIP appeals, which shows the current system is not working effectively.
Contact’s calls for change
We are calling for:
A more person-centred assessment process that properly reflects people’s real day-to-day experiences.
Better recognition of mental health conditions, neurodiversity, fluctuating conditions and the impact of supervision and night-time care.
Greater flexibility and accessibility in assessments, including giving claimants choice over face-to-face, telephone, video or paper-based assessments.
Fewer unnecessary reassessments for people with lifelong conditions unlikely to improve.
Improved training and understanding among assessors.
More detailed and transparent decision-making.
Properly funded advice and advocacy services to help families navigate the system.
Stronger safeguards to ensure disabled people are treated with dignity and respect throughout the process.
The public narrative must stop framing disability benefits as a barrier to work. Many disabled young people rely on PIP to access education, training, volunteering and employment opportunities.
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