Last October the government announced an independent review into the overpayment of Carer’s Allowance related to earnings.
Contact’s Counting the Costs 2024 research found those of you getting Carer’s Allowance, 1 in 10 had been overpaid. On average, having to repay the Benefits Office £1,045.
Take our survey and tell us how overpayments are affecting you by 10am, Thursday 16 January.
We will collate your answers and share them with the independent review on Monday 20 January 2025.
What does the survey cover?
The survey asks 12 questions about topics the independent review is looking at, including: • How overpayments of Carer’s Allowance linked to earnings accrued and why it happened. • What changes can be made to reduce the risk of such overpayments accruing in future. • How the Department for Work and Pensions (DWP) can best support those who have accrued overpayments of Carer’s Allowance.
School transport can be the glue that helps hold things together for families with disabled children but we’re hearing from more and more families with teens over the age of 16 that transport has been taken away and it’s having a damaging impact on the whole family.
And recent media coverage has helped highlight increasing numbers of young people who, without council transport, just aren’t getting to college at all and are missing out on vital education – like this family who spoke to the BBC this week about how this has impacted them, Son ‘never leaves house’ after Birmingham special needs transport cuts.
Young people over 16 do not have the same rights to free transport as children of compulsory school age, instead transport for 16-19 year olds is discretionary, and local authorities may ask parents for a contribution. Many areas are changing their transport policies for 16-19 year olds and will offer parents a personal travel budget in the first instance, rather than a seat in a school bus, minibus or taxi.
Parents tell us that this is putting them under financial pressure – that costs are unaffordable and that many have to give up work just to get their young person to college.
Help us change this
We think this is unfair and are campaigning for change. Our School transport campaign, will work alongside families to scope out the picture of home to school transport for all ages of disabled children across England and use this to influence policy, raise awareness in the media and campaign to improve school transport for disabled children and young people.
Your experience and views are important to us. If there is something you would like to say about school or college transport, please email [email protected].
The Law Commission is currently consulting on its proposals for reforming the law which their review found to be too complicated for families and professionals alike. The consultation runs until 20 January.
The extra general consultation events – two online and five ‘in person’ – are open to anyone interested in disabled children’s social care including parents, charities, academics, professionals and social workers.
Please click the following links for more information and to register your place.
Over the last two weeks, the Law Commission has listened intently to families’ experiences of social care at targeted sessions for parent carers, supported by Contact. Contact has run two of its own focus groups and will use parents’ feedback in our response to the consultation.
We heard worrying stories from exhausted families who have struggled to get support, who been penalised for keeping their children safe or blamed when they seek help.
If you have time, we urge you to also respond to the Law Commission consultation individually. You don’t have to answer all the questions and there’s a summary and Easy Read version too.
Our school transport survey closes on Monday. Here, our Research, Policy and Public Affairs Officer Rachel explains why fixing school transport is so important to her.
School transport really matters to me
Rachel with her son and husband campaigning for Contact in Westminster Hall
Without school transport, I wouldn’t be working here at Contact. Instead I would be driving my son across London to get him to and from college. He’s 20, and he goes to the nearest college for him, but it’s six miles away and he couldn’t possibly travel on his own.
But transport is a postcode lottery. I know of many families having to spend hours each day, time and money they cannot afford, just to get their child to the education they are entitled to.
That’s why our Transport Matters survey really matters to me. It looks at the effect of school transport on families – what’s working and what isn’t – and will give us the evidence needed for our campaign.
We’ve had a good response – so thank you to everyone who’s taken part so far! But I know there are many more families out there that we need to hear from, and this is the final chance to reach them.
Just another survey?
I know that if I spend time on a survey, I want it to make a difference.
It’s important for you to know that we are ready to put the results of this survey to good use. We are speaking with press and parliament to raise awareness of the issues and to campaign for change.
School transport can be the difference between coping and crisis for families with disabled children. More and more families with teens over the age of 16 tell us that transport to school or college has been taken away just because of their age.
A young person over 16 does not have the same rights to free transport as children of compulsory school age, even though 16 and 17 year olds must stay in education or training.
Instead, transport for 16-19 year olds is discretionary, and local authorities may ask parents for a contribution. Young people’s transport needs may be reassessed at this age and travel arrangements may change, even when learners stay on at the same school.
Young adults aged 19 and over may be entitled to free transport in some circumstances, and parents cannot be made to provide transport for this age group
Why should age matter?
Contact trustee, Ramandeep’s son has been on a school bus since he was young – it always worked well and meant he arrived at school happy and ready to learn. But this has all changed just because of his age.
My son always had transport provided to get to school, but now that he has turned 17 transport has been stopped – despite there being no change to his needs or where he goes to school. This leaves us in the difficult situation of trying to cover a 20-mile round trip every day, just to get him to the education he is entitled to.”
I support the Transport Matters campaign that will raise awareness of the issues around transport and campaign for change for people like my son.
Tell us how transport affects you
When transport is not provided for disabled youngsters it can have a huge impact on the whole family; with parents having to give up work, paying high costs for taxis, siblings missing out on school hours and some disabled students not being able to get to school or college at all.
We can’t let austerity erode another vital service for disabled young people . Our Transport Matters campaign, funded by the Motability Foundation, will find out how transport is affecting families and campaign for change.
Last month we ran a live Q&A session in our private (closed) Facebook group. Our parent advisers answered your questions about everything from eligibility decisions to inappropriate provision.
We know that transport to school and college is often the glue that holds families together. But so many families are going without.
We want to gather evidence on the multiple reasons for this, so we can campaign for change.
The survey is for parent carers with disabled children or those with additional needs aged 0 – 25. It should take no more than 15 minutes to complete. The deadline is Monday 18 November at 10am.
There is an opportunity at the end to win one of 10 vouchers worth £50 each.
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.
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