Category: Information & advice


New figures from the government show that the number of children in England with an Education, Health and Care plan being educated at home has risen by 34% in the last year and now stands at 5770.

The figures also show that more than 17,000 disabled young people are Not in Education or Training (NEET).

Unmet need

Imogen Steele, Education Policy lead at Contact, said: “Attendance concerns for parents with disabled children, are not new, but the number of families affected and their experiences with school have worsened.

“Children with disabilities and health conditions have historically had more absences for many reasons including: health, lack of support in school, waiting for a suitable school place, delays in EHC assessments, and issuing EHC plans, as well as higher rates of exclusion. But Contact’s helpline has found that most recently attendance issues arise due to unmet need.”

Contact has advice and information on school absence for parent carers in England, on our dedicated webpages about absence from school.

Imogen Steele added: “Coupled with this, the government’s drive to boost attendance has led to parents in England being penalised for their child’s genuine medical absence.”

Family experiences of attendance issues

In response to the government drive to improve school attendance, many families shared their stories with Contact. They hope to raise awareness of the many reasons children with disabilities and health conditions might struggle to attend school. Here are two of those stories.

Amber

Amber is nine. Over the last few years she has struggled to attend school. 

Amber always enjoyed school, but her demeanour changed in lockdown. When school reopened, she struggled to reintegrate, and she found wearing certain clothes and shoes unbearable leading to meltdowns.

Amber masks really well. She is well-behaved and doesn’t present as challenging or obstructive in school. As a result, her anxieties have been dismissed or trivialised. In almost every interaction, school say “she’s fine” and don’t follow through with plans and promises, so they’ve lost her trust.

Her attendance is getting worse along with her frustration and her mental health. It’s a daily struggle, which has had a detrimental effect on my mental health. It’s so frustrating that the view of parents are overlooked and underestimated.

Because of the inconsistencies between alleged support and what is actually provided, I’ve applied for an EHCP, I successfully won the appeal for LA to assess, which they’ve done and concluded she doesn’t need a plan. I’m now in the middle of an appeal for that.

It feels as though Amber is very misjudged and misunderstood. Sadly this seems to be escalating her trauma and dislike for school. But as a parent I feel like I need to prioritise her wellbeing.

Charlie (not real name)

Charlie associates school with being scared…not just scared, terrified! It was too busy, too much noise, different smells, constantly feeling sick and dizzy, having to sit still, not understanding things, rules, behaviour charts that scared him, having to do things a certain way, feeling out of control and just constant fear. Then once he got home, extreme exhaustion. 

He should now be coming to the end of Year 3. But he hasn’t attended school for over two years.

At the start of Year 1 he managed just one term. As soon as the formal lessons commenced after the October half term, things went rapidly downhill. He then did a few weeks of going in for 15-30 mins a day and various attempts to get him to ‘bond’ with the TA in the Year One class. But to no avail. My son didn’t want to be there and the mornings yet again became impossible. Crying, screaming, running, hiding, hitting, spitting, begging, vomiting. For hours. Sometimes starting very early in the morning, sometimes in the middle of the night and sometimes at bedtime the night before. 

My son would say he wanted to die and would say ‘why are you doing this to me, don’t you love me’? My heart breaks when I think back to those times when I carried him into school kicking and screaming.

We tried hard to keep a good relationship with school, but it was frustrating. We felt judged and not believed. I was offered parenting courses. Threatened with fines and of off-rolling.

Two years on I wish I could say things were better but we are not much further forward. My son was allocated a place at a specialist school, but apart from a few sessions he has been unable to attend. He has trauma from his experience in the mainstream school and he cannot get past the overwhelming fear of school and learning. We are now trying to get him an out of school package of education (EOTAS) but this is not proving easy and even with an EHCP in place and diagnoses and a handful of professionals backing us, it’s still proving near impossible to get the support he needs. The battle never ends and I wish instead of constantly battling for support I could devote my energy fully on my son. 

Figures from a BBC investigation show that home education is at its highest level since the pandemic.

The latest government figures suggest mental health is the biggest reason for the rise in home education. Special educational needs and disabilities is the fourth biggest reason why families have chosen to home educate their child.

Contact’s education helpline is hearing from parents that home education is being suggested to families when their child is struggling at school.

Don’t feel pressured

While elective home education can be a positive step for some children and families, it is not for everyone. It’s important that parents come to a decision themselves and don’t feel pressured into it.

Angie Fenn, Head of Advice at Contact, said: “If you are thinking about home education for your child, it is important to understand the responsibility you are taking on and to explore all other possible options first.

“Your child’s school cannot force you to de-register your child. The school should not put pressure on you to home educate because the school can’t meet your child’s needs or to avoid a permanent exclusion or a penalty for non-attendance.”

By choosing to home educate, you agree to take responsibility for your child’s education, and your local authority will not provide a tutor or financial help. In some areas the local authority has a home education adviser who can provide guidance to parents, but that is not guaranteed.

Further information about home education

We have information about elective home education on our dedicated web pages.

Unhappy with the naming of the school or college in your child’s Education, Health and Care (EHC) Plan? Maybe your Local Authority has refused to issue an EHC plan or EHC needs assessment request, or you need help starting an appeal and understanding your rights.

The number tribunal appeals has increased significantly over the last few years and parents who call our helpline often have questions about considering mediation before appeal, how to lodge an appeal, the process, and deadlines.

Find out more about your rights to appeal to the SEND Tribunal in England, what sections of an EHC plan you have the right to appeal and how to appeal at our special Q&A session on 27 June between 10-11:30am in our private Facebook group when our parent advisers will be answer your questions.

How to ask your questions about appealing to the SEND Tribunal in England

To take part, you must be a member of our Facebook Group. If you are not a member, simply answer the three membership questions when prompted, and one of our moderators will let you in.

Then, visit our group on 27 June anytime between 10-11:30am to ask your question under our special Q&A post.

The session will be carried out in writing (not a live video). This means you don’t have to stay for the whole duration: just pop your question in the comments, and then come back at a time that suits you to read our reply!

Please note, our helpline education advisers cannot offer legal advice, and the helpline does not offer SEND tribunal representation.

We look forward to you joining us.


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

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

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

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

Who does it affect?

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

Substantial drop in income

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

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

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

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

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

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

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

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

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

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

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

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

Many disabled children say that leisure and play are the most important things missing in their lives — often due to accessibility barriers and a basic lack of information available locally.

To help your family make the most of summer together, you’re invited to take part in a special Q&A session with our advisers in our Facebook Group on Thursday 20 June between 10-1130am.

This is a great opportunity to get advice about accessing holidays, activities and short breaks for your disabled child including:

Where possible advisors will also try and signpost to local support. Contact with other families can be a great way to find out about fun things to do as well as sharing tips and ideas.

How to join the Q&A

To take part, you must be a member of our Facebook Group. Simply answer the three membership questions when prompted, and one of our moderators will let you in.

Then, visit our group anytime between 10-11:30am on 20 June to ask your question under our special Q&A post.

The session will be carried out in writing (not a live video). This means you don’t have to stay for the whole duration: just pop your question in the comments, and then come back at a time that suits you to read our reply!

Can’t make it on Thursday?

If you can’t make it, don’t worry! You will still be able to read through the Q&A in our Facebook Group even after the session is finished.

We also have lots of information about holidays, play and activities on our website, as well as advice about accessing short breaks, finding charitable grants and applying for leisure discounts.

If you care for a child with a rare condition please come along to our free online event on 12 June, 10-2pm.

This online conference is a rare opportunity for you to meet and share experiences with other parent carers and to hear from rare condition support groups who provide a lifeline to so many families across the UK.

Secure your free place using Eventbrite.

Attendees will also have the chance to try out some of Contact’s parent workshops, tailored for families caring for a child with a rare condition and covering topics like parent wellbeing and supporting siblings for example.

Contact’s work supporting rare families

Contact has always worked with families with rare conditions, bringing them together, providing advice and support, and highlighting the unique challenges they face.

Visit our rare conditions page for information on getting support for your child and your family.

Our A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.

Contact’s Rare Conditions Network

Thanks to funding from Pears Foundation, we created the Rare Conditions Network  and resources to support the charities who are part of our Rare Group Network. Our Rare Conditions Network toolkit includes advice on managing volunteers, guidance on using social media, and our group action pack.

As part of our Autism Central work, we’re delighted to be offering individual telephone sessions for parent carers in London and the Midlands to talk through any concerns you have about autism and your child.

You can book your FREE 30-minute call on a day and time that suits you if you live in London or if you live in the midlands.

The calls will be with a person with lived experience of autism.

If you cannot find a suitable time, please email [email protected]

For personal assistants (PAs)

On 18 June, 7-9pm we’re running a free workshop for PAs, Understanding sensory processing, aimed at personal assistants (PAs) who help young disabled people with their day-to day living.

About Autism Central

Together with Ambitious about Autism, we run the London and Midlands hubs. Our hubs offer group and one-to-one sessions to help you and other parents and carers find the information and services available in your area. We may also run events such as workshops, drop-in sessions, coffee mornings or virtual meet-ups.

Find out more about what’s on offer.

As part of our Autism Central project we’ve got loads of FREE workshops for you if you care for a child or young person with autism and live in the Midlands or London.

To book your place on any or all of these workshops, please click the links below.

4 June, 7-9pm: One page profiles. This workshop will help parent carers understand how to use One Page Profiles in educational settings.

6 June, 10am-12: Sensory processing. A chance to understand sensory processing and how it impacts how we feel, behave and learn and the opportunity to explore strategies to support your family.

11 June, 7-9pm: Meltdowns and Shutdowns. For parent carers who want to understand more about how stress and anxiety can impact autistic people alongside practical ideas to help you and the person you care for.

14 June, 10am-12: Supporting play. This workshop will help you understand why play is important as well as providing you with tips and ideas for play with your child.

20 June, 10am-12: Toileting. To support parents and carers to understand factors that can affect toileting and provides tips and strategies to try at home.

Are you a personal assistant (PA)?

18 June, 7-9pm: Understanding sensory processing. This workshop is primarily for workshop personal assistants (PAs) who help young disabled people with their day-to day living.


Last week, our family finance advisers ran a special Facebook Q&A on Universal Credit: managed migration.

More than 60 parent carers stopped by our Facebook Group to ask questions and get expert advice on moving onto Universal Credit from legacy benefits as part of the managed migration process in England, Wales and Scotland.

To help those who weren’t able to take part in the Q&A, we’ve rounded up the five top questions asked during the session — have a look below!

You can also visit our Facebook Group to read through the rest of the Q&A, or take a look at our online advice for more information about Universal Credit: managed migration.

  1. Can I ask for a managed migration notice to cancelled where I have a young person aged 16-19 who is still in full time non advanced education?

Several parents wanted to know if they could ask for their managed migration notice to be cancelled if they had a young person in full time non-advanced education.

The Department for Work and Pension’s (DWP) current policy is that they should not send a managed migration notice to a family who has a 19 year old who is still in full time non-advanced education. Instead, a managed migration is not supposed to be sent until the young person either leaves non-advanced education or turns 20 – whichever happens first.

This is because that family may lose out because payments for a child stop earlier under Universal Credit than under child tax credit. While tax credit payments can continue until a young person in non-advanced education turns 20, under Universal Credit rules child payments must stop on the 31 August after their 19th birthday.

Despite this policy, some managed migration notices have been sent in error to families with a 19 year old in non-advanced education. This is likely because the DWP may not always be aware what age a child is when they are sent a notice. In these cases, a parent has the option of asking Universal Credit to consider cancelling their managed migration until a later date.

Although the DWPs policy only applies to 19 year olds, there is a strong argument that where a child in non-advanced education is currently aged 18 but will be turning 19 before 31 August 2024 that a similar principle should apply. They too will be at risk of losing out, so there would be grounds to ask for a cancellation where a family falls into this group.

It is worth noting that while most families with a 19 year old (or an 18 year old turning 19 before September) will be better off getting their managed migration notice cancelled, this is not necessarily the case for everyone. Ideally families should seek individual advice before requesting a cancellation in case there are other individual circumstances that mean getting a managed migration notice cancelled is not in their best interests.  

The situation is different if your child will be turning 19 at some point after 31 August 2024. In that case Universal Credit payments for your child won’t stop in August 24 but could continue up until the end of August 25. This means that the DWP are unlikely to agree to a cancellation request on the grounds of your child’s age.  

It’s worth remembering that the DWPs policy of not asking families with 19 year olds to claim Universal Credit could be changed at short notice. The government are keen to move everyone on tax credits onto Universal Credit by next year. This may result in change of policy where families with 19 year olds in non-advanced education no longer have their migration deferred.  

Other popular enquiries during the Q+A

2. I got my migration notice last week. What documentation do I need to complete my claim?

Universal Credit will accept a screenshot of your bank account provided it is clear and readable and covers the last three months. You may also be able to download recent bank statements using online banking and these may be easier to read and upload. There will be an option to upload evidence as part of the claim process., so it is helpful to have everything ready to upload before your start the claim.

You will be asked what rates of DLA your children receive as part of the claim. Universal Credit will then verify this with DLA, you shouldn’t need to send them an award letter.

However, if you are asked to provide evidence then a clear photograph of the full award letter can be uploaded.

As Universal Credit is now an online claim process, they expect claimants to upload documents rather than sending them through the post as this is a much quicker process. You can also take documents to your local jobcentre if you would struggle to upload, scan or photocopy them.

Before you start the claim process, make sure that your awards of Child Tax Credit include the correct elements for your children, particularly the disabled child elements as this will ensure you receive the correct amount of Universal Credit and any transitional protection that you are entitled to. You should be receiving a disabled child element for each of your children who receives DLA and the higher disabled child element if they are receiving the higher care rate of DLA.

3. We got our notice and have to move from tax credits to Universal Credit by mid June. I’m a full time carer for my son and get Carers Allowance. However, my partner also provides full-time care to my son. I’m worried he will be expected to look for work when we move onto Universal Credit.

You won’t be expected to look for work or have regular interviews due to the fact that you are eligible for carer’s allowance and are exempt from any work-related requirements. However, there is a definite risk that your partner might be expected to take steps to look for work.

Where two people both provide 35 hours or more care to the same disabled person only one of them will be treated as a carer and automatically exempted from all work-related conditions. The other carer is usually expected to undertake job seeking and other work-related activities.

However, it is important to know that Universal Credit staff do have a discretionary power to exempt a second carer providing 35 hours or more care to the same child from any work related conditions, if they believe that this is reasonable in all the circumstances.

4. We are currently on income related Employment Support Allowance (irESA) and tax credits. Please can you advise on the dates that we will be migrated onto Universal Credit? We have not had any letter.

The first thing to say is that you won’t be moved onto Universal Credit automatically – you will be invited to make a claim for Universal Credit and will need to do so within certain deadlines. The Department for Work and Pensions plans to start sending managed migration notices to people who only get irESA alongside tax credits from July onwards. It is expected that most claimants in this group will have received a managed migration notice by the start of the Autumn. irESA claimants who don’t get tax credits and who are either on irESA only or on ESA in combination with housing benefit won’t start to be sent notices until Autumn 2024 onwards, For details of the timetable for migrating people on other legacy benefits see Contact’s website.

The main thing that you should do before then is get advice to check that your current legacy benefits are maximised and that you are not missing out on any payments. The higher your legacy benefits going into the managed migration process, the better the chances that you will be eligible for some transitional protection payments.

For example, if you are a tax credits claimant and have a dependent child on DLA, PIP or their Scottish equivalents you should double check to make sure that your tax credits award includes additional tax credit amounts known as the disabled child element for that child. If they get a disability benefit at the higher rate for personal care or enhanced rate for daily living, they should also get a severely disabled child element.

Checking your tax credits award to make sure you are getting these extra payments will not only ensure that you aren’t missing out in the here and now but will also increase your chances of qualifying for transitional protection top-up payments once you eventually do migrate onto Universal Credit. Making sure your existing benefits are maximised is probably the most important thing that you can do while you are still waiting to receive a managed migration notice.

You should also check that your award of Employment and Support Allowance includes the correct elements for yourself and particularly the disability elements.

5. I got my migration letter to say I must move onto Universal Credit by July. My son was recently assessed as having autism. He’s been awarded DLA. Would I still need to move to Universal Credit or defer?

The fact that you have a child on DLA does not mean your managed migration notice would be deferred. You will still need to claim Universal Credit and should do so by your deadline date. What is important is that you get a benefits check before then to make sure that your legacy benefits include all the correct disability and carer payments before you claim Universal Credit. Checking your legacy benefits to make sure you are getting these extra payments will not only ensure that you aren’t missing out in the here and now but will also increase your chances of qualifying for transitional protection top-up payments once you eventually do migrate onto Universal Credit. The higher your legacy benefits are the better the chances you will get some transitional protection payments.

If you are autistic or the parent or carer of an autistic person would you like to help others understand more about autism? We’ll give you training and all the support you need to help other families.

We’re looking for autism peer educators in London and the following regions:

If you live in London and this opportunity is of interest to you please visit our Peer Educator London Expression of Interest page.

OR if you live in one of the other regions listed please apply using one of the areas listed below visit our Peer Educator Expression of Interest page.

Please note applicants must be willing to travel to facilitate face-to-face workshops.

Peer recruitment is part of our work with Autism Central to offer families and carers of autistic people high-quality and easily accessible autism education, training, and support through peer educators, alongside our dedicated website.


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

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

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

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

Parent-led campaign

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

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

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

Awards ceremony

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

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

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

Find out more about the campaign.

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

What are Safety Valve agreements?


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

Why we are concerned

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

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

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

The negative impact for children and young people with SEN

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

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

What we would like to see

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

Local authorities with Safety Valve agreements

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

1.           Barnsley

2.           Bath & NE Somerset

3.           Bexley

4.           Blackpool

5.           Bolton

6.           Bracknell Forest,

7.           Bristol,

8.           Bury

9.           Cambridgeshire

10.         Croydon

11.         Darlington

12.         Devon

13.         Dorset

14.         Hammersmith & Fulham

15.         Haringey

16.         Hillingdon

17.         Hounslow

18.         Isle of Wight

19.         Kent

20.         Kingston-upon-Thames

21.         Kirklees

22.         Medway

23.         Merton

24.         Norfolk

25.         North Somerset

26.         North Tyneside

27.         Richmond-upon-Thames

28.         Rotherham

29.         Salford

30.         Slough

31.         South Gloucestershire

32.         Southwark

33.         Stoke-on-Trent

34.         Surrey

35.         Torbay

36.         Wiltshire

37.         Wokingham

38.         York

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

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

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

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

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

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

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

Find out more about our Carer’s Allowance campaign.


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

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

What is the overpayment issue?

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

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

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

The experience of families with disabled children

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

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

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

Government failings

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

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

Carer Support Payment in Scotland

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

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

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

Last year the Department for Work and Pensions (DWP) started the process of asking people on legacy benefits to move onto Universal Credit, even if they had no change of circumstances. This is known as ‘managed migration’ onto Universal Credit.

Initially only people on tax credits who weren’t getting any other means tested benefits were asked to migrate. However, the Department for Work and Pensions (DWP) has now started the process of asking people on other legacy benefits such as income support and housing benefit to migrate onto Universal Credit.

In the coming months hundreds of thousands of claimants will receive a managed migration notice telling them that their legacy benefits will be stopping and that they need to claim Universal Credit instead. However, you aren’t transferred onto Universal Credit automatically. Instead, you need to make a claim for Universal Credit and will have a deadline to do this by. If you miss your final deadline, you won’t be eligible for any transitional protection to make sure you aren’t worse off. 

Confused about managed migration onto Universal Credit? Join us on 14 May

To help clear up any confusion, parent advisers from our Family Finance Team are inviting you to ask any questions you have about managed migration to Universal Credit at a special Q&A session on Tuesday 14th May between 10am – 11.30 am on our Facebook page. This session is for parents in England, Wales or Scotland. Different rules apply to managed migration in Northern Ireland.

Can’t make Tuesday the 14th?

We have lots of information about managed migration onto Universal Credit on our website. Take a look at our webpage about Moving onto Universal Credit from legacy benefits and watch our new video on ‘Getting a Universal Credit managed migration notice’

The government has launched a 12-week consultation setting out plans to make it harder for disabled people to claim Personal Independence Payment (PIP).

PIP is a non-means tested benefit that helps with the extra costs of disability for people aged 16 to pension age. PIP replaces Disability Living Allowance (DLA) for children when they turn 16.

The Department for Work and Pensions (DWP) has set out options for reforming PIP in England and Wales. The green paper Modernising Support for Independent Living includes:

Derek Sinclair, Contact’s benefits specialist, said Contact was “extremely concerned”. The proposals seem to be driven by a desire to make spending cuts “regardless of the very serious impact this will have on many disabled young people.”

Ministers argue for reforms to control spending on PIP that they predict will grow by 63% over the next five years.

Tell the government what you think

If you want to contribute your views to Contact’s consultation response on the green paper, please email our health lead Amanda on [email protected].

You can read the green paper and share your views directly by responding to the consultation on the government website.

We have lots of FREE online parent workshops for parent carers of children with autism coming up this May as part of our work with Autism Central which aims to make it easier to learn more about autism and services available to parent carers.

The workshops for families based in either the Midlands or London include:

Supporting toileting on Tuesday 7 May, 7-9pm. This workshop aims to help you understand factors that could affect toileting and will provide you tips and strategies to help.

Getting extra help in school on Thursday 9 May, 10am-12 will help you understand more about what additional help autistic children are entitled to at school.

Supporting your child to play, Tuesday 14 May, 7-9pm. At this workshop you’ll learn why play is important and hear tips and ideas for play with your child.

Using a one-page profile on Thursday 16 May, 10am-12. This workshop you’ll find out more about one page profiles – a useful tool to share with your child’s teachers to help highlight their individuality.

Understanding autism, Tuesday 21 May, 7-9pm.

All of these workshops are commissioned by NHS England’s Workforce, Training and Education Team and are part of the Autism Central programme offering families and carers of autistic people high-quality and accessible autism information, education and coaching. Contact and Ambitious about Autism are the London and Midlands Regional Hub partners for the programme.

Managed migration is the process where claimants on existing means tested benefits and tax credits – known as the legacy benefits – are told these benefits are ending and are asked to claim Universal Credit instead.

Up until recently managed migration only applied to people getting tax credits and no other legacy benefits.

However, the Department of Work and Pensions is now sending managed migration notices to claimants on other benefits. These will be issued: 

The Department of Work and Pensions expects that all claimants in these groups will have been migrated onto Universal Credit by March 2025.

Disabled adults who are getting Income-related Employment and Support Allowance only or income related Employment Support Allowance in combination with housing benefit will be migrated slightly later. It is expected that the first claimants in this group will be migrated from autumn 2024 onwards, with the last claimants sent migration notices by December 2025.

Worried what managed migration means for you?

If you are confused or worried about what managed migration will mean for your family, Contact has lots of information that can help on our website.

Watch our new video – what to do if you get a managed migration letter

We have produced a new video where our benefits expert Derek explains what you should do if you receive a managed migration notice telling you that your legacy benefits are going to stop.