The earnings limit – the maximum amount a carer can earn a week while getting Carer’s Allowance – will raise to £196 per week (16 hours at the National Minimum Wage) from next April. The earnings limit will also increase in line with any future increases in the National Minimum Wage.
Una Summerson, Head of Policy at Contact, says:
“Many carers will be encouraged to hear that the care they give to their disabled and seriously ill relatives has been recognised at long last in the Chancellors budget today. Increasing the Carer’s Allowance earnings cap – by £45 – is unprecedented and will be welcome news to the families we support. It is something that Contact and parent carers have been campaigning on for years. Today’s announcement means that carers will now be able to earn over £10k a year without losing an essential benefit.
“We also look forward to hearing more from the independent review into Carer’s Allowance overpayments and about the government’s plans to look at the current Carers Allowance earnings cliff-edge, which means if carers go over the earning cap by just one penny they lose all of their Carer’s Allowance.
“Contact also welcomes the announcement in today’s budget for SEND provision in schools across England and a promised £1 billion uplift in spending.”
Tomorrow, Wednesday 30 October, Chancellor Rachel Reeves will present the new Labour government’s first Budget Statement to parliament.
We have started to hear some of the commitments she will make. These include announcements over the weekend to invest in rebuilding crumbling schools, help to increase the number of nurseries and money for breakfast clubs. Trialling a new kinship allowance is also being funded which could help some family members who look after disabled children.
All these measures are welcome, but families with disabled children have heard the Chancellor promise a Budget of ‘real ambition’ and are asking – will the Budget be ambitious enough for families like theirs?
With the support of parent carers like Samantha, Contact has written to Chancellor calling for an energy social tariff for families who are running lifesaving equipment at home.
Disabled children deserve a government prepared to think big and build a society where everyone has equal opportunities. That’s why Contact set out our Roadmap for government which we think would make a big difference to families, including:
Fix Universal Credit for young people in education and those with looked after status
Increase the earnings cap on Carer’s Allowance
Introduce measures to make schools more inclusive for disabled children
The National Audit Office has today published a report into the Special Educational Needs (SEN) system in England. The report says the system is not delivering better outcomes for children, is financially unsustainable and should be reformed.
It comes after a number of other reports highlighting the crisis in the SEN system.
Anna Bird, Chief Executive of Contact, said: “The National Audit Office report’s findings will come as no surprise to families with disabled children who are living this reality every day, with their children being failed and prevented from reaching their full potential. It is what we hear from many of you each week on our helpline. This failure has come at a cost because delays in support lead to very expensive crisis interventions.
“We welcome the NAO’s suggestion of cross department working, which was always the intention of the Children and Families Act 2014. And we agree that investment in mainstream schools will help make them more inclusive and reduce costly interventions. We would caution that if reform does take place, it must be done in consultation with parents and it is imperative children don’t lose important legal rights.”
The new government has promised to reform the SEND system but has said it will take time. They say it is skewed towards specialist and over reliance on EHCPs. They want to invest in mainstream to increase inclusivity in different ways including encouraging them to set up SEN units.
The government has announced an independent review into the overpayment of Carer’s Allowance.
Parent carers are among the 156,000 unpaid carers from whom the Department for Work and Pensions (DWP) is attempting to claw back overpayments. Many are having to pay back hundreds or in some cases thousands of pounds, pushing them into financial hardship.
Anna Bird, Contact’s Chief Executive, said:
“Contact welcomes the government’s review of Carer’s Allowance overpayments. For many years, we have been highlighting the cliff edge of the Carer’s Allowance earnings limit. Not only is it a disincentive to work, it also leads to overpayments, which can add to the stress and financial difficulties that families with disabled children are under.”
Eligibility for Carer’s Allowance includes a maximum weekly earnings threshold of £151 a week. In some cases, carers have unknowingly 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. We have heard from families who have gone over the threshold of the earnings limit by a few pence, but have to pay the full amount of the allowance back.
Other parents have contacted the DWP to inform them of a change in circumstance, only for officials to say there is a backlog, and it could take weeks to update the system. So despite doing everything correctly and notifying the department, carers are wrongly receiving their allowance.
The government review will look at why the overpayments were made, and what can be done to stop it happening.
Children facing “huge” waits for assessments by community and mental health services are being “robbed of their childhood”, according to the Children’s Commissioner for England.
In her latest report, “Waiting times for assessment and support for autism, ADHD and other neurodevelopmental conditions”, Dame Rachel De Souza found 400,000 children with suspected neurodevelopmental conditions are waiting for their first appointment with community health services.
“Children and families left in the lurch”
Thousands of children were waiting more than two years. One in six had waited more than four years, the equivalent to a full key stage in their education.
Around 34,000 children were waiting for their first contact with learning disability and autism services in child and adolescent mental health services (CAHMS), the report found.
Children referred for Down syndrome assessments waited the longest, an average of two years and seven months. Those referred with ‘organic brain disorder’ waited an average of one year and four months. It took up to eight months to see the epilepsy/neurological service.
“Children and families are often left in the lurch, expected to cope by themselves while they wait,” Dame de Souza said.
What does Dame de Souza’s report recommend to government?
Dame de Souza’s report recommends:
Investment in more appointments in children’s community and mental health services.
A joint health, education and social care workforce strategy for disabled and neurodivergent children and children with SEND to recruit therapists, psychologists, personal assistants, and other key professionals.
Integrating services in ‘families of schools’ with teams of therapists, educational psychologists and mental health professionals working in schools to support children.
Support for children on waiting lists with school “drop-ins” with multi-disciplinary teams, without need a diagnosis.
Making Disabled Children’s social care teams “consistently inclusive” of children with neurodevelopmental conditions.
What does the Commissioner do and what powers does she have?
The office of the Children’s Commissioner is a national, independent organisation. It has statutory powers and a legal duty to promote and protect the rights, views, and interests of all children in England in accordance with the United Nations Convention on the Rights of the Child (UNCRC).
The commissioner provides advice to the government on how policies legislation may affect children’s rights.
We know it was a devastating time for many families as services were closed overnight and some schools shut their doors. Some families are still dealing with the repercussions as waiting times for support, assessments and services continue to suffer backlogs. Contact joined parents of clinically vulnerable children in campaigning for access to a vaccine, which far too long to be approved.
Universal Credit is something that our helpline team receives lots of calls about. Many of you tell us that you find it complicated to work out what you or your child are entitled to, particularly when circumstances change.
Over the next few years, more families will receive an invite to claim Universal Credit as part of the managed migration process.
We want to get a clearer picture of how Universal Credit is impacting families with disabled children. We want to understand what the issues are. And we’re looking to establish what practical steps the government can take to help ease the burden on already stretched, vulnerable households.
Our Counting the Costs survey is a chance for families across the UK to have your voice heard about the financial impact of having disabled children. We will use your responses as evidence in our conversations with government and potential funders.
In our last survey, 40% of Universal Credit claimants said they are worse off since claiming. This is despite assurances from the government that no one would be worse off.
In case you missed it: our template letters for backdating Universal Credit payments
Sometimes there can be a delay in the Universal Credit service finding out that you are eligible for a disabled child addition or carer element. This means there’ll be a period in which you get Universal Credit, but your award is missing the additional elements. The law says that the extra payments can in most cases be backdated, i.e. paid from an earlier date.
But sometimes the Universal Credit service refuses to backdate to the correct date. This is an issue we know affects many families.
In late August, energy regulator Ofgem announced that the energy price cap would rise by £149 a year from 1 October.
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.
We want to get a clearer picture of how much families with disabled children are currently paying for energy. We want to know what impact this rise is likely to have. And we’re looking to establish what practical steps the government can take to help vulnerable households.
Counting the Costs is a chance for families across the UK to have your voice heard about the financial impact of having disabled children. We run the flagship survey every few years to maintain an ongoing picture of family finances.
If you can spare around 20 minutes, we’d love you to take part. You’ll help us identify our campaign priorities for the next few years. We’ll also use our findings to make sure families with disabled children are at the forefront as the new government sets its agenda.
This follows the Department for Education’s release of suspension and exclusion data in the academic year 2022/23. The figures show a huge increase in suspensions – 786,981 from 578,280 the previous year. Permanent exclusions rose to 9,376, up from 6,495 in 2022/23.
We welcome signs the government wants to see exclusion used only as a last resort, not as a behavioural “fix”.
Anna Bird, Chief Executive of disability charity Contact, said: “The impact of exclusion can be devastating on a disabled child. It makes them feel isolated and affects their confidence and attendance, as they don’t feel like they belong in the school environment. Parents are often unable to work.
The new Labour government has pledged to enact new education policies in today’s King’s Speech.
King Charles III set out the government’s legislative agenda, including plans for a children’s wellbeing bill in England, at the State Opening of Parliament.
Requiring all schools to cooperate with the local authority on school admissions, SEND inclusion, and place planning.
Requiring free breakfast clubs in every primary school.
Creating a duty on local authorities to have and maintain Children Not in School registers, and provide support to home-educating parents.
Ensuring greater consistency between academies and maintained schools by requiring all schools to teach the national curriculum.
Elsewhere, the government is committing to establish a Fair Pay Agreement in the adult social care sector and a new mental health bill.
Contact’s view
Una Summerson, Contact’s Head of Policy, says:
“The current SEND system is underfunded, forcing schools to reduce what support they can offer. SEND law is routinely ignored. We welcome the government’s requirement that local authorities work closely with schools to help them address issues around SEND and admissions.
“We also welcome the new government’s decision to move responsibility for SEND under the Minister for Schools. This is a move that reflects how central good SEND support is to the whole school system. And it recognises that wider reform – on things like the curriculum and attendance – has a huge impact on the school experience of children with additional needs.
“Likewise, while we are pleased to see a commitment to provide free breakfasts to all children, the government must make sure it provides alternatives to those children who can’t access school meals in the usual way – an issue we’ve campaigned on for lunchtime meals.
“Together with families and other charities, Contact will continue to work with policy makers and politicians to improve support for disabled children and unpaid carers.”
The new ministers working on disabled children’s services
With a new government comes a new team of ministers working in areas supporting disabled children and their families. These are:
Catherine McKinnell MP, Minister of State for Schools with the SEND portfolio in England.
Janet Daby MP, Parliamentary Under-Secretary of State with children’s social care portfolio.
Stephen Morgan MP, Parliamentary Under-Secretary of State with attendance, behaviour and mental health support responsibilities.
Sir Stephen Timms, Minster of State for Social Security and Disability (including DLA/PIP. Universal Credit and cross government disability issue).
Stephen Kinnock MP, Minister for Care at DHSC, with SEND on his list of responsibilities.
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 the campaign and fundraised to mount a legal challenge 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 Natalie Hay, 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.
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.
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.
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.”
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.”
Contact would like to see more specialist provision and college courses as well as SEN support in mainstream schools. This would ensure more disabled children and young people can have their needs met locally, and would reduce the requirement for travel.
We are calling on the next government to close the loophole in the law for 16–18-year-olds. Currently they are expected to stay in education but without the means to get there. Until the government fixes the law, councils must be given the funding to make free transport arrangements for this group of young disabled people.
Need advice?
You can find information on the rules around school transport including how to challenge a decision in our school transport web pages.
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:
A child is only looked after as part of a planned short break.
A child with looked-after status is living with their parents.
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.
Reduce waiting lists for children’s mental health and NHS community services, diagnosis and help at school and college.
Revive disabled children’s social care funding, law and the specialist workforce.
Roll out a much-needed increased package of financial support to tackle extra disability, care and energy costs.
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.
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.
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?
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:
A need to reduce “inappropriate referrals” for seeking EHCP assessments.
A target to reduce the number of pupils with EHCPs who attend a specialist setting by 29%, transferring them to a mainstream schools.
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 [email protected]
Local authorities with Safety Valve agreements
Below is the list of Local Authorities with Safety Valve Agreements as of May 2024.
Get the latest SEND updates, benefits advice, practical help caring for your child, plus free workshops and family events in our weekly email newsletter.
(Make sure you select ‘News updates’)