Category: Campaigns


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.”

Related information

Child and parent on the bus

Transport to school and college

This advice applies to England only. Read advice for Northern Ireland, Scotland and Wales. Some children are eligible for free school transport to get to their education setting. Browse this section for advice on school transports, including challenging transport policies and over-16 transport in England. Mobile users: Browse the ‘IN THIS SECTION’ menu above. Desktop […]

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Education & learning

Parent information about education support for children and young people with additional needs and disabilities.

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Family and Contact staff outside 10 Downing Street

Campaigns and research

Join us to influence policy and campaign so politicians and decision-makers tackle the inequalities faced by families with disabled children.

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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.

Yesterday in Parliament, MPs debated the issues around accessing savings locked in Child Trust Funds for more than 80,000 disabled youngsters.

Watch Westminster Hall debate back on Parliament TV. Or read full transcript of the debate in Hansard, the official report of all Parliamentary debates

Minister commits to work with DWP as Labour MP says any future government must act

Sir Jeremy Quin MP introduced the debate, on behalf of parent campaigner Andrew Turner. He pushed his own government to talk to the finance industry about the simple process they have been using to help some families unlock their savings.  

There was a speech by Sir Ed Davey MP, leader of the Liberal Democrat. His disabled son John will also be unable to access his savings. Labour’s shadow Justice minister, Alex Cunningham MP, said a Labour government will want to fix this injustice if they win the next election. He also included a statement from Contact’s Campaign lead, Una Summerson. She says: “implementing a less restrictive approach is in the best interests of disabled young people. Disabled young people must be allowed to enjoy their savings like everybody else. Continuing to promote actions that fail to address this issue will simply perpetuate injustice. There is an opportunity to bring common sense into the debate and to commit to a new approach”.

Mike Freer MP, responding for the government, made a potentially-valuable promise to talk to the Department for Work and Pensions about using the appointee scheme. 

Thanks to Nasreen Yasin, Claire Binney, Michele Creed, Ramandeep Kaur, Rachel Dixon and John Roberts and their son Joseph for joining us at debate. 

Martin Lewis raises issue on Good Morning Britain

This morning, the money journalist Martin Lewis raised the issue with a government minister on Good Morning Britain.  In response, the Minister said it is a “priority area for the government.”

You can watch Martin Lewis talk about the Child trust Fund debate with Sir Ed Davey MP on Good Morning Britain at 6.54am (timestamp: 0.48:00). The panel speak to the Minister at 8.38am (2:13:30).

This is a small step in the right direction, but not an immediate solution for the vast majority of disabled youngsters.  So the fight continues alongside parent campaigners, finance and legal firms.

Thank you again to all our supporters taking action.  

More than 31,000 disabled young people have been locked out of their own savings worth collectively £73 million. This is happening during a cost-of-living crisis that has disproportionately affected disabled people.

Westminster Hall Debate calls for safe, simply and swift solution

By 2029, when all Child Trust Funds have matured, 80,000 disabled young people in England and Wales will be locked out of their savings worth almost £210 million.

Jeremy Quin, MP for Horsham, is leading a Westminster Hall Debate today, Tuesday 19 March. He aims to press the Justice Minister for a solution that could unlock millions held in these Child Trust Funds.

Tune in and watch the debate live on Parliament TV at 4.30pm (Please go to the Westminster Hall debate section).

Mr Quin said: “This is a simple question of fairness. We all want young disabled people to have access to their Child Trust Funds in a way that is not only safe, but simple and swift.

“We need to ensure young people with a learning disability don’t lose their savings. Parents have enough to cope with without having to battle to access money invested for their children.

“Ministers have already taken positive steps, but there is much more that can be done. This debate will highlight routes that could provide easier access to Child Trust Funds for families supporting disabled young people.”

Mr Quin will urge the Minister to extend the Department for Work and Pensions Appointee scheme to cover Child Trust Funds. This is a safe and protected way already used by many families to manage benefit income for their disabled child.

Mental capacity rules locking disabled youngsters out

While non-disabled youngsters can access Child Trust Fund savings on their 18th birthday, many with a learning disability cannot. Due to Mental Capacity rules, the families of young people with learning disabilities unable to manage their money have to apply through the court of protection to access their Child Trust Funds. This is a prohibitively lengthy, costly and complex process.

Due to the bureaucratic process, there were just 70 court applications between Sept 2020 and May 2023. This compares to around 27,000 accounts maturing over the same period – 0.26%. The Ministry of Justice made tweaks to the last year process – moving some of the application online, waiving the fees and creating a toolkit for parents. Despite this, it still involves completing 12 forms of 84 pages. And it requires time-pressured GPs or social workers to complete a legal document, which many refuse to do.

Parent campaigner, Andrew Turner, said: “I’m afraid the Ministry of Justice’s measures are woefully inadequate and have made no discernible difference. For the majority of families, the process of accessing their disabled child’s savings remains out of the question without legal help.

“Back in September 2020, my disabled son Mikey was locked out of his Child Trust Fund. He simply wanted to buy an adapted bike with his money, and his life-limiting condition meant that time was of the essence. The Child Trust Fund was his only financial asset, which made it special. Nobody warned us we would need to go to court when the account matured. When we took advice, we were told it would be easier and cheaper for us to wait until Mikey died, when we could use a simpler process to reclaim the money. It was deeply upsetting. Four years later, this situation has not changed.”

Families already under pressure don’t have time or energy

Anna Bird, Chief Executive of Contact, said: “Every day on our helpline we hear from families with disabled children and young people struggling to make ends meet during this cost-of-living crisis. Surely it is more important than ever that disabled young people can access their own money. Families already under enormous pressures simply don’t have the time or energy to go through such a bureaucratic process.

“Some providers are already using the DWP appointee scheme to help families access their child’s savings. It is a tried and tested system to enable families manage their child’s benefit income. It provides adequate protection and is the obvious solution to unlock the savings of disabled young people.”

Philip Warford, Managing Director of Renaissance Legal, said: “We founded the Child Trust Fund Access Campaign back in 2016, years before the first Child Trust Funds matured. We could see this was a ticking time bomb for families with a disabled or vulnerable child who lacked capacity.

“We talk to families all over the country who have made the decision not to apply to the court to access their money because it’s too onerous, or who’ve started the process and have simply given up because of the number of hurdles they have to overcome.

“Together with our fellow campaigners, we believe that families of disabled children who lack capacity should be able to access and use savings put aside for their future. We urge the Government to invest time and energy in finding a workable solution.”

Parent carer Andrew Turner has secured an important debate in Parliament next Tuesday 19 March at 4.30pm.

The Westminster Hall debate will consider the thousands of disabled youngsters unable to access savings held in their Child Trust Funds and Junior ISAs .

It’s important that lots of MPs attend the Westminster Hall debate. The government must understand what it needs to do to stop disabled youngsters missing out on their savings.

We are grateful to Jeremy Quin, MP for Horsham, who is leading the Westminster Hall debate, “Child Trust Fund access for people seeking to manage the finances of others”.

Why this debate is important

More than 80,000 disabled young people have a Child Trust Fund – a type of tax-free savings account. However, due to lacking mental capacity, the vast majority of are struggling to access their own savings. This is because families must apply to the Court of Protection – a process that many find complicated, lengthy and in many cases, costly.

We all agree that there must be a process in place that protects vulnerable people from financial abuse. But alternative solutions are available. One is the expansion of the Appointee scheme, under which many parents are entrusted to manage their child’s benefits.

At the debate, we want MPs to ask the Government to do more so that disabled youngsters don’t miss out on their savings.

Ask your MP to attend the debate using our quick and easy campaign action.

A government minister will have to respond to the debate, so it’s important that lots of MPs attend to show what an important issue this is for families with disabled children.


Today, Chancellor Jeremy Hunt set out the government’s plans for the country’s finances in the Spring Budget. But there was very little announced that will help  families with disabled children and young people.

Samantha Tolmie, mum to Lewis, had written to the Chancellor asking for extra financial support for families like hers. She appeared in a BBC News film highlighting the situation she and others faced with energy costs and cuts to benefits. Here she reacts to today’s budget.

Ignored

Samantha says:

“Families like ours were pretty much ignored in today’s budget. We won’t benefit from the announced tax cuts. I worked for many years as a PA, and I adored my job. I had no choice but to give up employment to care for Lewis full-time. I’d dearly love to work, but I am now a carer around the clock. As a result, I am entirely reliant on benefits.

“There was nothing in recognition of the massive extra costs that disabled households face, which have been cruelly exacerbated by the cost of living crisis. I pay £500 a month for energy, which powers all Lewis’ life-saving electrical equipment. That is unlikely to change, except to go up, as Lewis is able to breathe only with the ventilators and other essential life support equipment. I won’t get any more of the cost of living payments to help towards those costs as they have come to an end, and there was no extension of these announced today.

“In fact, the only support measure aimed at families experiencing financial difficulties was a six-month extension to the Household Support Fund. This has of course been very welcome, but like the cost of living payments, barely scratches the surface.”

Faced with debt

Samantha continues:

“It is hugely disappointing that yet again families like mine have been let down. We are left to muddle through, faced with debt and the prospect of losing our home. We just want help and genuine, valid support to care for our children as best we can.”

As well as extra financial support for families, Contact, working with over 100 disability charities as part of the Disabled Children’s Partnership (DCP), had also called for increased funding for disabled children’s services.

The Chancellor did announce extra money to build additional special schools. But there was very little to address the wider systemic issues of a funding shortfall for SEND support in mainstream schools and social care on top of a workforce shortage and increased demand.

Money for additional special schools

Anna Bird, Chief Executive of Contact and Chair of the DCP, says:

“We hear time and again from families with disabled children who cannot access the help they need from education, health and social care. The cost of living is leaving them isolated and unable to enjoy the family life others take for granted, and preventing their children from thriving. 

“There is an immediate need for increased funding for support. 70 Conservative MPs wrote to the Chancellor at the weekend to call on him to invest £4.6bn annually in special educational needs and disability services.

“We, therefore, welcome the £105million for 15 additional special schools in the budget. We are pleased that the Chancellor has recognised the need for more specialist provision. However, it is only a tiny part of the picture. It does not explain where the specialist staff for these new schools will come from. Nor does it address the need for more specialist support in mainstream schools; nor the wider needs of disabled children and their families. There remains an annual funding gap of £573million for social care alone. 

“This funding must be followed by more sustained investment, alongside stronger accountability, so that parents do not have to fight for the support their children need.”

Parent carer Samantha with son Lewis
Parent carer Samantha with son Lewis

Parent carer Samantha, who has written to the Chancellor asking for more help for disabled households, has made a powerful film for BBC News to share her demands.

The BBC spent the day with Samantha and her son Lewis, who has a terminal condition similar to Batten Disease, to find out more about their money worries.

Samantha’s three simple asks

Watch Samantha and Lewis’ BBC News film

More than 3,000 families with disabled children have signed up to support Samantha’s three asks, which she explains in her letter [PDF]. More than 100 disability charities from the Disabled Children’s Partnership, which Contact CEO Anna Bird leads, also support the campaign.

Samantha is calling for:

Samantha writes:

“I was absolutely devastated to hear that plans for a social tariff had been shelved. I am literally terrified and too afraid to think about how we are going to cope financially when our financial support drops at the end of this
month when we are due to move over to Universal Credit…

“I am urging you to take steps to ensure families with disabled children and young people are not financially disadvantaged during this cost of living crisis. We did not choose to live this way. We are doing the absolute best we can for our children.”

Constant battle to keep afloat

Contact CEO Anna Bird on BBC Breakfast
Contact Chief Executive Anna Bird on BBC Breakfast

Speaking to BBC Breakfast Anna Bird, Chief Executive of Contact, said:

“Families with disabled children face a constant battle to keep financially afloat, because everything costs more when you have a disability.

“There are almost 100,000 critically ill children in the UK. Many need life-saving equipment like ventilators, food pumps and hoists. Their time is precious with their child, and they shouldn’t be spending that time worrying about household bills. Not only are they struggling with higher than average costs in a cost-of-living crisis, some also face a drop in their income. Young disabled people like Lewis have to claim Universal Credit due to their age, and they lose money. It’s a hugely complicated process too.

“That’s why Samantha’s letter to the Chancellor has struck a chord with almost 3,000 families and 100 disability charities who have signed up in support of it.

An opportunity to make a huge difference

Thank you to all of you who signed up to support Samantha. With thousands of people behind her, Samantha is right to tell the Chancellor that her situation is far from unique.

Tomorrow, Chancellor Jeremy Hunt has the opportunity to make a huge difference to families with disabled children across the UK. We hope he takes it.

The Disabled Children’s Partnership (DCP), chaired by Contact CEO Anna Bird, will soon close its survey on childcare of disabled children.

If you haven’t already, this is your chance to highlight any issues your family has experienced getting childcare for your disabled child.

The DCP will use your responses to campaign and engage with policymakers and to bring about change for disabled children and their families. 

The survey will take no more than around 10 minutes to complete.    

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Energy prices will drop by £238 a year from 1 April for households in England, Scotland and Wales, the energy regulator Ofgem has announced today.

The energy price cap will fall to £1,690 a year from £1,928, the current cap from January-March 2024.

The Ofgem energy price cap is the maximum annual price an energy supplier can charge for average usage on its standard variable rate. Ofgem reviews its energy price cap every three months based on wholesale markets.

It is important to be aware that the cap is not a limit on your energy bill. It is a limit on what the supplier can charge for each unit of energy, so that average usage at that unit rate won’t exceed a given annual cost. If your energy usage is above average, it could exceed the price cap.

A different energy market operates in Northern Ireland. There, an energy price guarantee will remain as a safety net until March 2024.

Disabled households still paying vastly more

While this is good news for many households, it’ll be little comfort to the thousands of families with disabled children who depend on vital medical equipment.

This essential equipment can’t always be turned off. As a result, families with disabled children are punished with far higher average energy costs. This is leading to debt and even health issues.

Mum Samantha is asking the Chancellor to use his Spring Budget to commit to an energy social tariff for families like hers reliant on life-saving electrical equipment. Her energy bills are a staggering £500 per month (three times the UK average). This is because her son Lewis needs electrical equipment, including ventilators, feeding pumps, suction machines, to keep him alive.

Support Samantha’s social tariff demand

Samantha knows she isn’t alone with her money worries. That’s why she has written to the Chancellor with three simple asks:

Samantha is calling on families and supporters up and down the country to support her three asks. She says, “together we can make the Chancellor listen”.

Support Samantha today by adding your name.

Ahead of the Spring Budget on 6th March, parent carer Samantha has written to the Chancellor demanding action on sky-high energy and living costs that continue to hit families with disabled children hardest.  

Support Samantha’s call for action

Samantha lives in Doncaster with her son Lewis. Lewis has a terminal condition called Batten Disease. She was told he might reach his 10th birthday. This month he turns 20 – he is a miracle every day. 

Samantha tries to make everyday count with Lewis. But like many families caring for critically ill children, she spends a lot of her time worrying about household bills. Her energy bills are a staggering £500 per month (three times the UK average). This is because Lewis needs electrical equipment, including ventilators, feeding pumps, suction machines, to keep him alive.

On top of this Samantha, is scared about claiming Universal Credit for Lewis and how they will survive on considerably less than they get under Child Tax Credit. 

Samantha knows she isn’t alone with her money worries. That’s why she has written to the Chancellor with three simple asks:

Samantha is calling on families and supporters up and down the country to support her three asks. She says, “together we can make the Chancellor listen”.

Support Samantha today by adding your name.

Need advice?

It was only through information from Contact that Samantha found out what financial support was available.

If you need advice about your energy bills or other financial help available, please visit our cost of living webpages. 

Our website also has information on claiming Universal Credit and other benefits such as carers’ allowance and Disability Living Allowance.

Contact believes the government is failing to address the cost of living crisis families with disabled children are facing in its latest Disability Action Plan.

32 actions to transform daily life

In the plan, the government sets out 32 immediate actions to “transform” daily life for disabled people. These include a commitment to make playgrounds more accessible and improved information for families with disabled members.

Some actions listed are:

No measures to tackle spiraling living costs

But the actions are silent on concrete practical measures to tackle spiraling costs and for reducing poverty among families with disabled children. Such measures might include increasing Carer’s Allowance and the Carer’s Allowance earnings threshold.

The plan acknowledges that disabled people raised cost of living concerns in the action plan consultation. In response, there is an action for the Disability Unit to “continue to engage across government” and share insights from the consultation to highlight concerns on the impact of the cost-of-living crisis on disabled people.

Amanda Elliot, Contact’s health lead, said overall the Disability Action Plan was disappointing and too narrow in scope:

“While the plan offers families a glimmer of hope on accessible playgrounds, it stops short on committing to mandatory guidance for local authorities to make sure this happen. The plan also does nothing to address the dire lack of accessible holiday schemes for disabled children.

“We know through our helpline and parent carer surveys that the most pressing and “immediate” issue for families of with disabled children are financial. There is nothing in the action plan that offers our families any hope this will improve.”

Stephen Kingdom, campaign manager of the Disabled Children’s Partnership, welcomed the action on accessible playground but said the plan did not provide “a complete strategy to address the systemic failures for disabled children and young people.”


Contact would like to see an increase in the amount of money disabled households can get towards adapting their homes.

Currently families can claim up to £30,000 through the Disabled Facilities Grant if they are assessed as needing adaptations to their home, such as installing a stair lift or putting in a downstairs bathroom. This amount has been capped since 2008 and due to the increased cost of equipment and building work, it is now worth a lot less in real terms.  

Shortfall

Anna Bird, Chief Executive at Contact, said: “This is an area of huge frustration for families. We hear from many having to make up the shortfall through fundraising. Many are carrying on with inappropriate housing – carrying children up and down stairs, bathing children in paddling pools in their living room.

“Our research found that over a quarter of families with disabled children say that their home makes their child’s condition worse or puts them at risk. This can send families into crisis, and we know the costs of helping families at that point are much, much higher. Getting the right equipment and environment so families can look after their child at home, saves money in the long run.”

Longer-term solution needed

An external review commissioned by the government in 2018 recommended that the upper limit of the Disabled Facilities Grant should rise in line with inflation. The government did put an additional £100 million into the pot for Disabled Facilities Grants in 2023 for two years, but Contact believes a longer-term solution is needed.

One family, Contact is in touch with through our Decent Homes campaign, has been waiting two years for adaptations to give Finlay, aged 17, the independence he needs. Although the family has been assessed as needing adaptations, the council will only pay £40,000 towards the costs, which are £94,000.

He can’t access the kitchen

Mum, Alexa, said: “I work full-time as a teacher and we are maxed out on our mortgage, so we can’t meet the shortfall. The house doesn’t work for Finlay, he can’t get into the kitchen, he can’t get to the fridge. A local company gifted us a festival toilet which is a portakabin on the back of the house. We are really grateful but it’s not a long term solution, as it’s freezing in winter.”

The parliamentary group, the Levelling Up, Housing and Communities (LUHC) Committee, has recently launched a parliamentary inquiry looking at housing for disabled people.

The aim of the inquiry is to look at ways to ensure disabled people have access to accessible and adaptable housing in England.

The Disabled Children’s Partnership (DCP), chaired by Contact CEO Anna Bird, is proud to launch its Manifesto 2024.

A Manifesto for Disabled Children and their families sets out what the campaign group wants to see from the next government. There will be a general election by January 2025 at the latest, and political parties are currently putting together their offer to voters.

The DCP, a coalition of more than 100 organisations backed by thousands of parent carers, is calling for parties to put families with disabled children at the heart of the next government.

The key asks of the Manifesto are:

We encourage all supporters to share our manifesto with their prospective parliamentary candidates. You can find out who that is at Who can I vote for?.

Parent campaigners with supportive MPs ahead of Free School Meals debate.

In a huge win for parent campaigner, Natalie Hay and Contact, the Schools Minister has agreed to update free school meals guidance following a debate in Westminster yesterday.

The changes will make clear that local authorities and schools are legally obliged to offer reasonable adjustments to children who can’t have their free school meal in the regular way, such as by providing supermarket vouchers.

MPs from all parties supported our motion

Labour MP Ian Byrne led the debate in Westminster yesterday, Wednesday 10 January. In his opening speech, Byrne highlighted new figures from Contact that show more than 164,000 eligible disabled children are unable to access the free school meals they should be receiving. 

Mr Byrne said that “families should not have to face this battle”. He called on the government to update its free school meals guidance making local authority and school responsibilities clear.

What followed next restored our faith in the political process. More than 20 MPs from all parties made powerful speeches in support of the motion. They referenced numerous constituents’ stories and quoted Contact’s research. An engaged, well-briefed Minister responded for the government.

As one parent put it: “I was moved to tears by watching MPs out there that care.” 

We will keep a watchful eye to make sure the government follows through on its commitment to update guidance.

Thank you to all our supporters

Thank you again to all our supporters who invited their MP to the Westminster Hall debate. You sent more than 1,400 emails to your MPs. It’s parents like you who helped us achieve this campaign win.

You can watch the debate back on Parliament TV (forward to 17.18), or you can read the transcript of the debate or in the Daily Mirror.

Last month, the government conceded that free school meals should be provided to eligible children who are unable to attend school due to their special educational needs and have a package of support often referred to as education otherwise than at school (EOTAS). This was thanks to legal action by a group of parents led by Natalie Hay. Natalie independently raised £8000 through crowdfunding to instruct human rights lawyers to take this to court.

As a result, almost 2,000 disabled children across England missing out on a free school meal can now get funding for a free lunch from their local council.  

The government committed to preparing guidance for local authorities (expected in March 2024) to ensure that local authorities are providing access to a meal for those with EOTAS.

This legal action was a pivotal part of the campaign, because the government conceded that discrimination could be happening and agreed to update the Free School Meal guidance to ensure eligible children with a package of EOTAS can access their free school meal.

This was also confirmed at the Westminster Hall debate. Until guidance is published,  if you are in this position please use our template letter B.

Tens of thousands of eligible disabled children are missing out on their free school meal entitlement due to their disability or sensory needs.

This is despite the law being clear that most should be offered an alternative such as a supermarket voucher.

Children with conditions such as diabetes, epilepsy and autism are subsequently missing out on the equivalent of £570 a year of financial help. This is causing families to get into debt and turn to foodbanks.

MP calls for simple fix to make big difference

Ian Byrne MP for West Derby is leading a Westminster Hall debate today, Wednesday 10 January, about fair access to free school meals for disabled children.

The Merseyside MP has a proud history of campaigning to eradicate food poverty.

He said: “Over 100,000 eligible disabled children are missing out on their free school lunch, which is truly shocking. Access to food is a basic human right. I want to see universal free school meals. But while we wait for that, we must ensure the current system is fair and equal.

“Disabled children and their families are already more likely to be living in poverty due to the difficulties of juggling care and work. Research shows they have also been disproportionately affected by cost-of-living pressures.

“I was determined to lead this debate to highlight the discrimination that is taking place, after meeting an affected constituent. I am calling on the government to update their free school meals guidance. It must be made clear that schools and councils need to provide an alternative, ideally a supermarket voucher, to disabled children who can’t access a free school meal in the regular way. This is a simple fix that could make a big difference.”

Children missing out for various reasons

Research we carried out in March 2023 found different reasons why disabled children can’t eat their free lunch:

Last month, the government conceded that free school meals should be provided to eligible children who are unable to attend school due to their special educational needs and have a package of support often referred to as education otherwise than at school (EOTAS). This was in response to legal action by a group of parents.

As a result, almost 2,000 disabled children across England missing out on a free school meal can now get funding for one from their local council.

Families shouldn’t have to fight for help

Campaigners hope that this decision paves the way to all eligible children getting their free school meal. Today’s Westminster Hall Debate should be another catalyst to achieve that goal.

Natalie Hay founded the inclusive free school meals campaign three years ago. She realised many eligible disabled children were missing out on their free lunch, despite receiving supermarket vouchers in lockdown. She set up an online support group, which has grown to more than 2,700 affected family members.

Natalie said: “I am delighted that after three years campaigning, this issue is getting the attention it deserves. Following my legal action on behalf of families across the UK, a positive and equitable outcome is on the horizon for 2,000 disabled children missing out on their free school meal. Now we want the same outcome for the tens of thousands of others unfairly missing out on this vital support.”

Anna Bird, Chief Executive at Contact, said: “The current free school meals scheme is inaccessible to tens of thousands of eligible disabled children. We are grateful to Ian Byrne MP for championing this issue for affected families up and down the country.

“Almost all affected families say that missing out on school meals increased pressure on their weekly budgets. At a time when grocery bills are sky high, it’s vital that families get all the help they are entitled to without having to fight for it.

“We urge the government to act swiftly and update its free school meals guidance. This should make clear that local authorities and schools are legally entitled to offer reasonable adjustments to children who can’t have their free school meal in the regular way, such as providing supermarket vouchers.”

Want to watch the debate Live?

Tune in and watch the debate live on Parliament TV at 4.30pm.

We want to thank the almost 1,500 campaigners who asked their MP to attend today’s important debate.