Category: Campaigns


Contact is delighted to announce that the Free School Meals campaign, set up by parent carer Natalie Hay, has taken top prize in the Disability category at this year’s Charity Awards, the longest-running and most prestigious awards scheme in the charity sector.

Contact was recognised for our work supporting and amplifying the parent-led campaign, to ensure eligible disabled children don’t miss out on their free school meal.

Together with parent campaigner Natalie Hay and her son Matteo, we were honoured to be invited to a black-tie ceremony at the Royal Lancaster Hotel in London, hosted by broadcaster, commentator and writer Baroness Ayesha Hazarika. There we were presented with a trophy alongside the nine other category winners.

Working collaboratively

Anna Bird, chief executive at Contact, said: “We are very proud to win this award, which is testament to the hard work of the Contact campaigns team and our ethos of working collaboratively with parent carers.

“Campaign leader, Natalie Hay saw discrimination taking place and decided to take a stand on behalf of all parent carers. That is the strength of the parent carer community. We were honoured to work alongside Natalie and other parent carers to effect change and ensure that eligible disabled children don’t miss out on the free school meal they are entitled to.”

Proud of this prize

Matt Nolan, chief executive of Civil Society Media which organises the Charity Awards, congratulated Contact on winning the highly-coveted award.  He said: “For 24 years, the Charity Awards has been shining a spotlight on the vital and inspiring work that UK charities carry out right across the country. In 2024, the sector is contending with soaring costs, rising demand and shrinking donations, yet the resilience, ambition and innovation in these applications continues to impress and inspire us. In a year of record entries, Contact should be hugely proud of this prize.” 

Contact’s research found that 164,000 disabled children were missing out on their free school meal due to their disability or sensory needs, or because they are unable to attend school due to illness or waiting for a suitable school place. 

The law is clear that they should receive an alternative such as a food vouchers in lieu of the meal, yet thousands weren’t.

Parent Natalie Hay led a campaign to stop disabled children missing out on free school meals and Contact joined her fight. Together we successfully convinced the government to admit that its current practice discriminated against those who couldn’t make use of the school meals. The government committed to update its guidance making clear schools have a duty to provide a reasonable adjustment such as a supermarket voucher. The guidance was published in March 2024.

If all families who are eligible take advantage of the vouchers, the gain to those families would be around £93m.

We are very grateful to Ian Byrne MP and solicitors Rook, Irwin and Sweeney for supporting the campaign. We couldn’t have achieved the win without them.

If your child is missing out on their free school meal

We have template letters to help those missing out on a free meal and want to claim vouchers instead.


Contact’s helpline and online communities are hearing from families unhappy about their child’s transport package which they have received for the new school year.

In Birmingham some families have received a bus pass in place of their young person’s usual school transport arrangements. While some disabled young people can travel independently, many can’t.

Worried and angry

Anna Bird, Chief Executive at Contact, said: “Families of disabled young people in Birmingham rightly feel worried and angry at having received school bus passes in place of their teenager’s usual school transport package.

“Disabled children and young people are more likely to travel further to school or college and, unlike their non-disabled teens, many can’t use public transport when they turn 16. Being offered unsuitable alternatives when it is not always appropriate could put them at risk.

“We really don’t want to see parents having to give up or reduce hours of work and disabled youngsters not completing their education or training because their transport needs have not been met.

Transport difficulties

School transport is often the difference between coping and crisis for families with disabled children. But through our helpline and our school transport project we know that families in Birmingham are not alone in facing transport difficulties. That is why we will be asking the new government to fix transport for young disabled people.”

There have been many consultations and changes to school transport policies across England over the last few months. Families are finding out now how those changes are going to impact their children and young people in September.  

Information

Contact has information on how to challenge a school transport decision. We also have school transport information including the duties of councils to provide school transport to disabled children and young people and eligibility.

The number of learning disability nurses has collapsed to “alarmingly low levels”, according to latest data from the Royal College of Nursing (RCN).

A learning disability nurse helps children and adults with a learning disability and their families access health care. They coordinate referrals and health checks and provide extra support to people attending A&E or admitted to hospital wards. The NHS developed the learning disability nurse specialism to tackle poorer health and preventable deaths in people with learning disabilities.

But new data shows the number of learning disability nurses has fallen by 44%, from 5,553 in 2009 to 3,095 in 2024. UCAS data seen by the RCN also shows consistently low admission on learning disability nursing courses. Only 2% of all nursing course acceptances are for learning disability courses. Rates of acceptance are particularly low in the South East, South West and East of England

The RCN told Learning Disability Today that there were now large sections areas of the country facing a future without specialist learning disability nurse support.

The RCN has called on the next government to recruit enough learning disability nurses to ensure people with learning disabilities can access the health care they need.


There has been an increase in enquiries on Contact’s education helpline about school transport for young disabled people who are 16 and over. We are hearing from more families whose child’s transport has been denied or they are being charged increased costs for it.

Many councils use their discretion to fund transport for disabled young people, aged 16 and over, despite there being no legal requirement under transport law to do so. But as their budgets have come under increasing pressure they are looking at where they can cut.

Channel 4 News have investigated the post-16 transport issue in this film. It features Contact’s CEO Anna Bird and families we support.

School transport is a top issue

Anna Bird, Chief Executive at Contact, said: “School transport is consistently in the top 10 issues on Contact’s education helpline. We anticipate demand for advice and support through our helpline and online channels to increase in the next few months as councils look to make further savings on their school transport costs.

“But it’s vital that councils and the government understand what is at stake. School transport is the difference between coping and crisis for many families with disabled children.

“That’s why it feels important and timely for Contact to be launching a new project about school transport for disabled children and young people.”

Announcing Contact’s new school transport project

The project is parent-led and has been made possible thanks to a grant from the Motability Foundation. The project will scope out the picture of home to school transport for all ages of disabled children across England. This evidence will be used to influence policy, raise awareness in the media and campaign to improve school transport for disabled children and young people.

Rachel Dixon, policy lead on school transport at Contact, said: “As the parent of a disabled 19-year-old who uses school transport to get to college, I am in this project heart and soul.

“I know first-hand that a lack of specialist provision and college courses for disabled young people means they often have to travel much further. And travelling independently is not possible for many.

“School transport is an integral part of the school day for disabled children and young people, building confidence and independence and we will be making that case very loudly through our new project.”

Please answer some questions on post 16 school transport to help our campaign.

What we would like to see

Need advice?

You can find information on the rules around school transport including how to challenge a decision in our school transport web pages.

Find out more about our school transport campaign.


Families asked to claim Universal Credit under managed migration will be left much worse off if they have a disabled child who is “looked after” by their local authority in a residential setting.

These families will be denied access to the system of top-up payments called transitional protection. These payments ensure that everyone moving onto Universal Credit via managed migration isn’t worse off.

We have already spoken to a family likely to see a drop in income of £850 per month. Unfortunately, they won’t get transitional protection payments to make up these losses.

Contact working with Child Poverty Action Group, has raised concerns with the Department for Work and Pensions (DWP) about the huge losses that some families will incur.

Who does it affect?

This isn’t just an issue for families with a disabled child in residential care. In some cases, a disabled child in residential school or residential college can have ‘looked after’ status, even though their accommodation is on a voluntary basis.

Substantial drop in income

Derek Sinclair, our Family Finance expert, said: “We are really concerned that some families on tax credits whose disabled child has looked-after status face a substantial drop in income when the DWP asks them to claim Universal Credit.

“Parents with a looked-after child in residential accommodation still incur significant costs. They pay for their child’s clothes and personal belongings as well as travel, leisure and social activities. In many cases, looked-after children will return home frequently, not only during school holidays but at weekends too.

“Faced with such a significant drop in income, families may struggle to maintain regular home visits and keep in contact with their child. This will have a detrimental impact on the mental health of the family and the disabled young person.”

Why are families with looked-after disabled children likely to be worse off?

The treatment of looked-after children is much less generous under Universal Credit than tax credits. Under tax credits, a parent can continue to receive amounts for a child looked after by the local authority in residential accommodation, so long as they are in that residential accommodation solely because of their disability.

Under Universal Credit, a parent cannot receive any amounts for a looked-after child. This is the case even if they are in a residential accommodation for disability reasons. The only exceptions to this will be where either:

When is a child treated as looked after by a local authority?

This means that a child is being looked after by a local authority under section 22 of the Children Act; section 17 (6) of the Children Scotland Act; or section 74 of the Social Services and Well-Being (Wales) Act 2014.

Most children in local authority-funded residential care will have looked-after status. Some children in residential schools or colleges whose placements the local authority funds/part-funds may also fall under this definition. Someone accommodated under section 20 of the Children Act falls under section 22.

What can I do if I have a looked-after disabled child and I get a managed migration notice?

If you are a family getting tax credits for a disabled child in residential accommodation who has looked-after status, and you have received a managed migration notice giving you a deadline to claim Universal Credit, phone the Contact Helpline as soon as possible. You can call us on freephone 0808 808 3555 (Mon-Fri; 9.30am-5pm).

The DWP can cancel a managed migration notice if they accept this is in the best interests of the claimant. There is an argument that they should consider doing this in cases involving a looked-after child, given the financial loss you will face.

The General Election will be held on 4 July. This will be your chance to vote for who you want to represent you in Parliament. 

We have been hearing from many of you, expressing your fears and also your hopes for whoever forms the next government. 

Three asks that will make a big difference 

Working with families, we have three main asks that will really make a difference. We are calling on the next government to: 

We know that these are big asks.  But disabled children deserve a government that is prepared to think big and to build a society where everyone is given their own best chance to be successful. 

Share our Roadmap for the next Government with your local parliamentary candidates.

10 successful steps

So, what would be a good start for the next Government towards making meaningful change for disabled children and their families?  

We’ve identified 10 SUCCESSFUL steps that would have an immediate impact.

These include scrapping the Carer’s Allowance earnings limit and introducing an energy social tariff. We also want to see the post 16 transport loophole closed and the savings of disabled young people unlocked. 

Many of these changes could be achieved in the first 100 days of the new Parliament.  

How you can support our asks 

Share our 10 SUCCESSFUL steps with your local parliamentary candidates and ask them to pledge their support to disabled children if elected (or download our Roadmap for the next Government)


Contact is delighted that the free school meals campaign led by parent campaigner Natalie Hay, has been shortlisted for a Charity Award in the disability category.

Our research found 164,000 eligible disabled children could be missing out on a free school meal due to their disability or sensory needs.

Following a hard-fought campaign by Natalie Hay, supported in the last year by Contact and lawyers at Rook, Irwin, Sweeney, the government has updated its free school meals guidance to help those children access their lunch entitlement.

In March the updated guidance for England was published and included new sections on reasonable adjustments and children with a package of support called Education Otherwise Than At School (EOTAS). It says that an alternative should be offered, such as a food voucher, where a child can’t eat their free school meal in the regular way. This means that 164,000 eligible disabled children should now be able to access their free school meal more easily.

Parent-led campaign

Anna Bird, Chief Executive at Contact, said: “We were so proud to support such a brilliant parent-led campaign alongside Natalie. She recognised the injustice and worked tirelessly to get equality for disabled children up and down the country.

“It is fantastic to get recognition for the campaign through this Charity Awards shortlist, showing the power of charities and lawyers working alongside parent campaigners on issues that matter most to them.”

The Charity Awards, which announces its shortlist today (17 May), is the sector’s most highly-regarded excellence recognition scheme.

Awards ceremony

The 10 category winners, plus the recipients of the Overall Award for Excellence and the Daniel Phelan Award for Outstanding Achievement, will be announced at a black-tie dinner in July held at the Royal Lancaster Hotel in London.

The evening will be hosted by broadcaster and commentator Baroness Ayesha Hazarika, who will be joined on the night by a host of celebrities, representatives of the shortlisted charities, as well as leaders from Britain’s best known and best loved charities.

Do you need help to access your child’s free school meal?

Find out more about the campaign.

Is your child eligible for a free school meal but can’t get it due to their disability? We have resources to help you claim an alternative to the free school meal.

What are Safety Valve agreements?


Some local authorities in England with large budget deficits have been signing up to Safety Valve agreements over the last three years. They get extra funding from government by agreeing to reduce their debts and manage their high needs funding in specific ways that the Department for Education requires. There are currently 38 local authorities with safety valve agreements.

Why we are concerned

Contact raised concerns about safety valve agreements with the Department for Education in 2023. We believe the agreements risk pushing local authorities to cut Special Educational Needs (SEN) funding. The agreements include a review system to ensure that financial targets are met, with little to no obligation to review how the cuts are made and if the Special Educational provision which remains is adequate to meet needs.

A report published by IPSEA at the weekend highlights the worrying consequence of the agreements. IPSEA’s report shows that the conditions attached to individual safety valve agreements are about cost cutting. As such there is a concern that they could lead to local authorities breaching their legal duties to children and young people with SEND.

The council documents from the safety valve areas that were examined by IPSEA all had references to:

The negative impact for children and young people with SEN

One of the first councils to sign up to a safety valve agreement has been condemned by inspectors over its “failing” SEND services.

Mainstream schools are also negatively impacted by these safety valve agreements, as in some areas there has been a reduction in the top-up funding that schools receive for pupils with SEND who do not have an EHCP. A headteacher of a secondary school in a safety valve area told tes magazine that this has  meant that the school is less inclusive. .

What we would like to see

We support IPSEA’s conclusion that safety valve agreements, which centre on cost cutting rather than the needs and legal rights of disabled children and young people, cannot be allowed to continue to exist in their current form.  Contact will be monitoring the situation closely and would love to hear from you if you have any experience. If you live in a Local Authority that has signed a safety valve agreement and have anything to share, please contact imogen.steele@contact.org.uk

Local authorities with Safety Valve agreements

Below is the list of Local Authorities with Safety Valve Agreements as of May 2024.

1.           Barnsley

2.           Bath & NE Somerset

3.           Bexley

4.           Blackpool

5.           Bolton

6.           Bracknell Forest,

7.           Bristol,

8.           Bury

9.           Cambridgeshire

10.         Croydon

11.         Darlington

12.         Devon

13.         Dorset

14.         Hammersmith & Fulham

15.         Haringey

16.         Hillingdon

17.         Hounslow

18.         Isle of Wight

19.         Kent

20.         Kingston-upon-Thames

21.         Kirklees

22.         Medway

23.         Merton

24.         Norfolk

25.         North Somerset

26.         North Tyneside

27.         Richmond-upon-Thames

28.         Rotherham

29.         Salford

30.         Slough

31.         South Gloucestershire

32.         Southwark

33.         Stoke-on-Trent

34.         Surrey

35.         Torbay

36.         Wiltshire

37.         Wokingham

38.         York


School transport is consistently in the top 10 issues on Contact’s education helpline.

When the Department for Education updated the school age guidance on home to school transport, on the back of a Contact campaign, we welcomed many positive changes including clearer wording and sections on benefits and allowance, behaviour and independent travel training.

However, some concerns remained, including the section on accompaniment, which leaves parents largely responsible for accompanying their teenage disabled children to and from school.

Contact has been working with Cerebra, IPSEA, SOS!SEN to raise concerns about this section. We need to gather the experiences of families to inform our work to push for change.

Today we are asking affected families to complete a short survey. Do you have a disabled child aged 11-16 who’s been refused school transport because you live within 3 miles of their school and you’re expected to accompany them? If so, please do take the survey – it should only take a few minutes.

What is the issue

The guidance says that the daily pressures of fitting work and family commitments around the school run apply to all parents in the same way and it’s up to parents to “fulfil their various responsibilities”.

But the guidance doesn’t acknowledge that the pressures on parents with disabled children are different because their children will need to be accompanied to a much higher age than their non-disabled peers.

The consortium believes the guidance on accompaniment requires urgent review in order to uphold school transport and equalities law and to protect the rights of disabled children and their parents.

If you are affected please do take a few minutes to complete the survey. It will help us challenge the guidance and push for change.

New research from the End Child Poverty Coalition (ECPC) shows that the government’s current two-child limit on benefits policy is pushing families with disabled children even further into poverty.

The two-child limit policy introduced in 2017, restricts means-tested benefits like universal credit and child tax credits to the first two children in most households. As a result, affected families miss out on benefits worth over £3,000 a year per extra child after the second.

The policy formed part of the government’s drive to reduce welfare spending and its belief that removing eligibility for benefits for a family’s third and subsequent children would encourage parents to move into work, or work more hours. However, the new research from the ECPC reveals that the policy is hitting many parents with at least one disabled child most severely with 20 per cent of all households affected by the two-child limit having at least one disabled child and impacting 87,500 families with a disabled child.

The ECPC says removing the two-child limit on benefits would result in lifting 300,000 children out of poverty overall and mean 800,000 would be in less deep poverty.

Una Summerson, Contact’s head of policy said: “As well as scrapping the two-child limit on benefits there are other changes that would help families with disabled children avoid being pushed further into poverty. For example, scrapping the Carer’s Allowance earnings limit. This would allow carers to earn more without losing their entitlement and avoid the risk of overpayments.  

“We also know that more than100,000 disabled children would be better off by around £2,290 a year if the 50% cut to the lower child disability addition under universal credit was scrapped. This, and other quick fixes to Universal Credit such as making it easier for disabled young people in education to claim, could put more than £200 million back into their pockets.”

If you have a disabled child, or you are on a low-income or not working, you may be entitled to certain benefits and tax credits to help with the extra costs you face. Visit our webpage for more information.

Find out more about our Carer’s Allowance campaign.


Access to Child Trust Funds for disabled children was the subject of a question in Parliament this week.  

Shadow Disabilities Minister, Vicky Foxcroft, pressed Ministers on what steps had been taken to resolve the issue of 80,000 disabled children at risk of being locked out of the their savings. 

This follows a long-running campaign by parent carer Andrew Turner, supported recently by Contact.

Bim Afolami, Economic Secretary to the Treasury, responded confirming that he was working with colleagues. He confirmed, “this has the support of me and the Treasury and we’ll work across government to get this right”.  

Mr Afolami MP expressed the government’s recognition that the current situation isn’t working for families, adding “we do want to get this problem fixed”.  

It comes on the back of a Westminster Hall debate in March, where Minister Mike Freer committed to speaking with colleagues at the Treasury to solve this problem.

Families need action

Financial institutions such as One Family and Foresters, who have been leading the way in finding an industry fix, were recognised, with the Minister acknowledging the need to work with the Financial Conduct Authority (FCA) to ensure that financial institutions “doing the right thing” were not penalised for their efforts. 

Contact welcomes the positive statements from the Minister, but would like to see them backed up by concrete actions. Along with Andrew Turner, the parent leading this campaign, we met with Shadow Justice Minister Alex Cunningham this week. Mr Cunningham MP confirmed his party’s desire to work with us in finding a solution. 

Follow the campaign

Make sure you follow our Child Trust Fund campaign, and sign up to receive our campaigner emails to stay up to date. 


Contact is supporting a new petition calling for urgent reform of Carer’s Allowance to ensure it properly supports carers and puts an end to the devastating overpayments that many are facing.

As part of the Carer Poverty Coalition, we’ve joined forces with other carer charities to get as many signatures as possible. We need to get to 10,000 signatures for the government to respond and 100,000 to get a debate in parliament. Sign the petition today.

What is the overpayment issue?

Carer’s Allowance overpayments continue to make headlines in the media.

Eligibilty for Carer’s Allowance includes a maximum weekly earnings threshold of £151 a week. In some cases, carers have unknowlingly had their earnings rise above this limit, perhaps after a small pay rise. They’ve discovered the error only when years later the government has notified them that it will reclaim the full overpayment. By this stage the overpayment can amount to a significant sum.

New government data shows that it is attempting to claw back Carer’s Allowance overpayments from 156,000 unpaid carers. Around 11,600 of these carers have debts of over £5,000.

The experience of families with disabled children

We have heard from parents having to pay back money because they have gone over the threshold of the earnings limit by a few pence.

Other parents reported that when they contacted the Department of Work and Pensions (DWP) to inform them of a change in circumstance, there was a backlog, with officials saying it could take eight weeks to update the system.

So despite doing everything correctly and notifying the department, carers are wrongly receiving their allowance. They will then have to pay this back.

Government failings

Last month a Work and Pensions select committee told a government minister to fix the system. It was highlighted that the DWP is sometimes not quick enough to intervene when recipients are being wrongly paid, leading to large sums owed back.

And a government adviser, Johnny Timpson, resigned in protest at the situation of Carer’s Allowance overpayments. He said a lack of progress on the overpayments issue, coupled with carers not receiving help during the pandemic and no progress made in fixing social care, had prompted his resignation.

Carer Support Payment in Scotland

In Scotland, Carer’s Allowance is being replaced by the Carer Support Payment. Carers are being moved over to the new payment gradually. New claimants in certain areas are receiving the replacement benefit first.

The system in Scotland is more generous. Families with disabled children in receipt of Carer’s Allowance or Carer’s Support Payment can expect a supplement next month.

The Carer’s Allowance Supplement of £288.60 will be paid to carers in Scotland in June and October of this year.


Attendance is one of the top concerns on Contact’s helpline. Children with additional needs may have different reasons for being off school including appointments, anxiety and unmet need in school.

The government’s Moments Matter, Attendance Counts campaign upset some parents because it didn’t acknowledge those difficulties publicly. While the guidance does mention it, the poster campaign does not.

Imogen Steele, Education Policy Lead at Contact said: “We are concerned that the government’s attendance drive puts pressure on schools to only accept 100% attendance at a time when there is increasing unmet need leading to more children with disabilities unable to attend school. It could lead to a lack of understanding in schools about the reasons why a child with a health condition or disability might be off school. This could put parents and schools in an adversarial position.”

We asked for parents to contact us with their stories so that we can share their situations with the Department for Education to increase understanding. And we are delighted to have a blog from a parent sharing their school attendance experience.

A parent’s story  

I am the parent of two autistic children. Both my children had 100% attendance throughout school, until a time when they were unable to maintain the level of masking they had previously.

My daughter, aged 15, was able to mask her difficulties completely. So much so, that none of the staff even knew she was struggling. They didn’t see her meltdowns in the bathroom cubicle or her exhaustion when she got home at the end of the school day. They didn’t understand the toll her disabilities took on her body and mind and they didn’t acknowledge how difficult it must have been for her to function whilst battling with insomnia. They didn’t see why she chose to sit in the car until the bell was about to ring each morning.

The fact she got up every single day and pushed herself to get into school was courageous. There were times when she told me she didn’t want to go and cried. I told her firmly that she must. After all, going to school is what children do and parents must work, so what other option did I have?

I drove to work in tears and awaited the secret text from the toilets. There were times when she felt unable to disclose her discomfort and I made excuses to collect her early.

She was able to push down her own emotions and prioritise the feelings of others above her own. She felt guilty asking for the day off and so she continued to mask.

These Moments Mattered. I taught my daughter that she shouldn’t listen to her own body and mind. She should ignore her own needs and please those around her. Of course, I didn’t realise that’s what I was teaching her at the time.

Masking

My youngest’s disability meant that masking was incredibly difficult. But for a whole year, I told my son he had to go to school and that I had to go to work. I helped him feel better about going by inviting friends over for tea and I used lots of distracting strategies to get him into his uniform, out of the door, into the car, through the gates and into class. But none of these things were enough to make the setting appropriate for him.

The school system didn’t feel safe to him. His disabilities meant that the uniform was uncomfortable and he became unable to wear it. There were issues with friendships and teachers and more than anything the demands of school. He eventually stopped engaging with the learning.

I advocated for support and reasonable adjustments. But by the time I was listened to, his meltdowns were so bad, and his mental health began to suffer. I began to question why I was sending him somewhere that was causing such distress.

I realised that my priority was the mental health of my children.

These were the Meaningful Moments that Mattered. The moments where I listened to the voices of my children. The moments where I empathised with their experiences. And the moments where I advocated for their voices to be heard by others. I was finally in full attendance in my role as their Mother.

Would you like to write a blog on attendance?

We would like to hear from parents whose disabled children are unable to attend school. Please get in touch with Imogen.steele@contact.org.uk if you would like to write a blog sharing your personal experience of the current 100% attendance policy. Once you get in touch, we’ll be able to help you put something together. We’ll be sharing these blogs with all political parties in the hope of influencing future attendance policy.

Need advice?

We have information on attendance, absence and help with medical needs.


Carer’s Allowance overpayments have increased in the last year, official data shows. This is despite the government pledging to address the issue in 2019.

In recent months Contact has heard from parents who have had a small lump sum pay rise which has pushed them over the Carer’s Allowance earnings limit, so they have had to pay it back. Some have been worried about, others have had to refuse a pay rise for fear of losing their Carer’s Allowance.

Fear of losing Carer’s Allowance

Anna Bird, Chief Executive of Contact, said: “During this cost of living crisis every penny counts for families with disabled children. Families are telling us they are working harder than ever in the home and at work to care for their child as well as make ends meet. To hear of families on low incomes having to turn down a well-earned pay rise for fear of losing their Carer’s Allowance is shocking.”

Contact has long campaigned for improvements to Carer’s Allowance – an increase in the weekly payment, an increase in the earnings limit and the removal of the cliff edge when a carer earns over that limit and loses all their benefit. As well as reforming the system so that carers who study or claim a pension are not penalised.

Over the limit

Lisa Jenkins said: “I currently work 15hrs a week in school catering for my local authority at £9.96hr. (My wages are skimmed off to pay me through school holidays as I work in school catering).

“Last April we were awarded a pay rise (which brought us to the current limit of £9.96). However the payment wasn’t made until November, so I had 7 months backdated in my November pay. This took me over the Carer’s Allowance earnings limit. I now have to pay back £383, and I’ve had my Carer’s Allowance suspended since February.

“I can’t work anymore hours, I struggle to do a full month with my little boy because he has so many illnesses. I’ve been left to feel like I’ve committed a fraud and purposely pulled the wool over their eyes.”

In 2019 it was revealed that the Department for Work and Pensions intended to recover £150 million in overpaid Carer’s Allowance from 80,000 carers. At the time, the National Audit Office warned that the Government had failed to consider the impact the fines will have on already vulnerable families – many of whom are unemployed due to caring responsibilities. And we alongside many other disability charities warned that the majority of cases of overpayment are due to innocent mistakes by the claimant or the DWP’s own administration errors.

Punitive system

Contact urged the DWP to drop its pursuit of carers for overpayment and continue to do so.

Anna Bird added: “Instead of pursuing carers for repayment, we urge the Department for Work and Pensions to address the Carer’s Allowance earnings threshold. It is an indictment on our welfare system that carers who are doing so much are faced with such a punitive system.”

If your earnings are slightly above the limit, you can look at making deductions for example paying for childcare costs or into a pension scheme to ensure you keep your Carer’s Allowance.

Need advice?

More information and advice about Carer’s Allowance.

Find out more about our Carer’s Allowance campaign.

Family members Jen, Steve and Charlee

Plans to cut short break (respite) services in Derbyshire have been put on hold following legal action by Contact Changemakers, Jen and Steve Jackson.

Jen and Steve instructed lawyers from Rook Irwin Sweeney following advice from Contact that found the consultation to be flawed. It only ran for two weeks, and proposals were unclear. Rook Irwin Sweeney issued an urgent legal letter [PDF] to stop any decisions being made at a council meeting due to be held on Thursday 11 April. The council have now withdrawn the proposal and said it will consult again.

Jen and Steve hope their action inspires other parent carers to challenge unlawful decisions and cuts to services. They say having the backing of the local parent carer forum, lawyers and the Disabled Children’s Partnership has really made them feel “heard”.

Charlee is thriving at The Getaway

Jen and Steve explain why their daughter Charlee loves attending the short break service called the Getaway:

“Charlee has never had the opportunity to go to a friend’s house for tea, or on a school trip. She gets all of this and so much more at The Getaway. Charlee is thriving at the Getaway. Her communication has massively improved, she’s started using the toilet, she’s much more adventurous with her food, she’s better at feeding herself – all of which give her a much better quality of life, and will be a HUGE help for her ‘care’ in the long term”.

They go on to say:

“We were devastated when we heard about the consultation to dramatically reduce Short Break services in Derbyshire. The plans were clearly based on short term cost savings, pitting families who need a break against families who need full time residential care. It feels like we are an ‘easy target’ who have very little ‘spare time or energy’ to push back.”

Flawed consultation

Alex Rook from law firm Rook Irwin Sweeney, who acted under the firm’s innovative Social Justice Fund, said:

“Public bodies have a duty to consult fairly, including making sure that families fully understand the implications of any proposal, and giving them sufficient time for them to respond.

“This consultation was very clearly flawed – the actual proposed cuts, and the consequences of them, were very vague and two weeks does not give enough time for families to properly respond. The consultation was therefore unlawful, and any decision made in reliance upon would also be unlawful. We welcome the decision to withdraw the decision from the Cabinet meeting.”

The local parent carer forum also raised concerned about how the consultation has been conducted and back the legal action.

Balancing the books

Anna Bird, the CEO of Contact and the chair of the Disabled Children’s Partnership said:

“We understand the very difficult financial position that Derbyshire County Council, and indeed almost every other council, are currently facing. However, that does not mean that cuts to vital disability services ‘need’ to be made. It isn’t fair to balance the books on the backs of families with disabled children.”

Please email una.summerson@contact.org.uk if you are worried about cuts to respite services in your area.

The BBC has published research that finds council spending on school transport has doubled in the last five years.

Tim Oliver, leader of the County Councils Network, has called the costs “unsustainable” and suggests that parents might have to pay for their child’s transport.

Anna Bird, Chief Executive of Contact, said:

“We understand the very real difficulties that local authorities have with their squeezed budgets, but it isn’t fair to balance the books on the backs of families with disabled children. 

School transport costs are being driven up by a combination of factors, including the lack of funding for support in mainstream school for children with special educational needs (SEN), driving more to special schools that are often further away. This, together with more eligible children, plus higher fuel and staff costs and the reliance of local authorities on private companies to provide school transport, has led to increased costs. But the law is very clear on what transport must be provided to disabled children.

“We have seen school transport policies placing emphasis on cost-cutting rather than transport based on individual need and legal entitlements. It places all responsibility on parents already under enormous pressures. Disabled children are more likely to travel further to school or college because local schools can’t meet their needs. Unlike their non-disabled peers, many can’t travel independently, even as they reach secondary school age.”

In a huge win for disabled children and the free school meal disability inclusion campaign, the government has published its updated guidance on free school meals in England.

The guidance now includes a section on making reasonable adjustments for disabled children, such as by offering a food voucher. It describes the duty to make reasonable adjustments as “anticipatory”. Schools should be actively looking at which disabled pupils might be missing out on their school lunch and offering an alternative.

The guidance also now includes a section on children with an education package called education otherwise than at school (EOTAS). This makes clear that local authorities should provide free school meals to eligible children unable to attend school due to their special educational needs and who have an EOTAS package.

The update will benefit over 100,000 disabled children currently missing out on free school meals, whose families have faced a loss of £600 a year in financial support for their family.

Hard-fought win for parent campaigners

The publication of the updated guidance today shows the power of parent campaigners.

For the last three years, parent Natalie Hay has led a campaign to stop disabled children missing out on free school meals. Natalie independently raised £8,000 through crowdfunding to steer the campaign into legal action. This funding enabled the instructing of human rights lawyers to draft legal letters to help support all families of disabled children eligible for free school meals, but not getting help. It also allowed Natalie to recruit and lead a group of parents to take legal action and take the government to court.

In November 2023, the government conceded the case and admitted discrimination may be happening. The government agreed, in their letter to Natalie, to “issue new guidance around March 2024”. In the government’s response to legal action, they agreed for the first time to make their free school meals policy fully inclusive to such children receiving EOTAS. This legal action was a pivotal part of the campaign, because the government finally promised to update policy according to the Equality Act 2010.

Along the way, Natalie has been supported by Contact and other parent campaigners, including Irene Dow, who secured a Westminster Hall Debate in January via her local Labour MP, Ian Byrne. It was at this debate that Mr Byrne called on the government to update its free school meals guidance to make clear local authority and school responsibilities to make reasonable adjustments to disabled pupils. The School Minister, Damian Hinds, MP agreed to do this.

The scales have tipped to a more equal position

Anna Bird, Chief Executive of Contact, says:

“We welcome the updated guidance and its inclusion of the duty on schools to make reasonable adjustments.

“This will benefit more than 100,000 eligible disabled children up and down the country. They’ve been missing out on free school meal entitlement worth £570 a year. It’s a question of fairness, and today the scales have tipped to a more equal position.

“The guidance makes clear that schools do have a duty to provide an alternative to disabled children who can’t access their free school meal in the regular way. It comes on the back of a hard-fought campaign by parent carer Natalie Hay. She led and steered the campaign over three years, including launching a legal challenge that paved the way to today’s outcome.

‘We hope schools and councils are made aware of the guidance changes. We look forward to the Department for Education sharing how they are going to communicate the updated guidance with schools and councils across England.”

Next steps

We hope the updated guidance published this week will make it easier for parents to access food vouchers in lieu of their free lunch entitlement. We will update the template letters to include links to the updated guidance.

We’ll also continue to work with other UK governments to ensure their guidance on reasonable adjustments is clear too.

Missing out on free school meals?

Download our resources

Thanks to campaign leader Natalie Hay’s fundraising we have been able to work with human rights lawyers to produce a series of resources to help eligible families claim the free school meals they’re entitled to, but missing out on.

This includes newly-updated template letters for children in different school settings, with EOTAS packages or awaiting placements.

If you’re missing out on free school meals

Today, along with 130 other members of the Carer Poverty Coalition, we have launched a joint manifesto. We’re calling on all political parties to commit, ahead of an upcoming General Election, to end poverty amongst unpaid carers,

Led by Carers UK, the Carer Poverty Coalition advocates for policy change that values, recognises and supports unpaid carers. Carers are particularly vulnerable to poverty due to the additional costs they face and the difficulty balancing work and care. Last year, over a third (34%) of carers were cutting back on essentials such as food or heating. The rate of poverty for carers getting Carer’s Allowance more than doubled in the decade from 2010/11 to 2020/21. 

The manifesto sets out our key policy recommendations for a future Government to ensure carers facing financial hardship receive the support they need and that there are comprehensive plans in place to prevent carers falling into poverty to begin with.

We have called on all political parties to commission a full review into Carer’s Allowance and other means-tested benefits for carers. This must include raising the level of financial support and increasing the earnings limit. To help carers at all stages of their caring journey, we are recommending scrapping the 21-hour study rule so carers can study alongside caring. And we want extra payments for those over state pension age who are no longer eligible for Carer’s Allowance.

We are also calling for carers to receive more support in managing paid work alongside their caring responsibilities through a support programme for those wishing to return to work and the removal of barriers to employment.

To find out more, read the manifesto in full.