MPs debated the Bill last Wednesday 8 January, voting down an amendment to the Bill that would have stopped the proposals moving onto the next stage of scrutiny.
The Bill has two parts: one on children’s social care and one on schools. The latter part contains measures on breakfast clubs; the requirement for parents to get consent to home educate certain children; and the requirement on local authorities to keep a register of children not in school.
On behalf of Contact, Sarah Russell MP and Helen Hayes MP highlighted the need for breakfast clubs to be accessible. We have raised concerns about schools making exemptions that would discriminate against disabled children.
Connor Rand MP and Amanda Martin MP argued that many parents with disabled children are forced to home educate because the school is unable to provide the support their child need. In Contact’s view, the government must rethink its home education proposals. It doesn’t seem fair that parents forced to home educate a disabled child because a school can’t meet need, must then seek local authority permission in line with children at risk of harm. This could lead to children forced to stay in an unsafe environment. This Bill must also come alongside wider improvements to support for SEND in schools.
The Bill is now at Committee Stage, where detailed examination takes place. The Public Bill Committee is now taking written evidence, which it advises to submit as soon as possible.
The UK has experienced a week of freezing sub-zero temperatures, with the icy conditions only now set to ease.
This means that many households in some parts of the country are due a Cold Weather Payment this week.
What is a Cold Weather Payment?
The Department for Work and Pensions (DWP) pays a Cold Weather Payment of £25 to low-income families on certain means-tested benefits when temperatures in your local area fall (or are forecast to) to 0 degrees or below for seven days in a row.
The DWP will make a payment for each seven-day period of sub-zero temperatures between 1 November 2024 and 31 March 2025.
Who is eligible?
You are eligible for a Cold Weather Payment if you are on an income-related benefit and certain other conditions apply, such as having a disabled child or a child under five.
If you are eligible for a Cold Weather Payment, the DWP will automatically pay £25 into the same account you receive your benefits into.
More cost of living help as bills rise
On 1 January the Ofgem energy price cap rose to £1,738. This means households will be paying more for each unit of energy and will face higher bills as result.
We’re here to help. You can find lots of information on our website to help you keep costs down, find support to cover rising costs and make sure you’re claiming all the welfare support you’re entitled to.
The inquiry closes on Thursday 30 January, so there are just a few weeks to share your views.
Education Committee Chair Helen Hayes MP said:
“In recent years, report after report has documented the failures of the SEND system to deliver the support children and their families need. Despite the best efforts of professionals in schools and local authorities, across the country, children are being let down.
“As a Committee we now want to move beyond simply pointing out the problems and focus on finding solutions that are realistic and practical for the Government to implement. “
Contact has set out our solutions in our three SEND asks. We also have a briefing paper on how to improve accountability in the SEND system. Please use our ideas when submitting your evidence.
Last month, parent carer Laura spoke to Radio 5 Live about ways disabled children can be better supported in school. The segment starts at 1h10 minute into the programme. The Schools Minister is also interviewed.
How to share your views with the committee
To inform the Committee’s work on this inquiry, it welcomes written evidence submissions, via its website. The call for evidence is also available in alternative formats via the links below:
We wanted to say Happy New Year to all our families and to thank you for being an essential part of what we achieved throughout 2024.
We had the privilege of supporting over 400,000 families across the UK last year, offering advice and information that helped transform lives.
Our Family Finances team helped eligible families increase their household incomes by an average of just under £6,000 a year and the parent advisors on our helpline responded to nearly 10,000 enquiries from parent carers.
More than 2,700 children and parent carers attended one of our family events to connect, learn and share their experiences. At the same time, our By Your Side team reached over 1,700 families with seriously sick and disabled children in hospitals across the UK, providing crucial advice to navigate our complex systems of health, social care and education support. Through this support, families were empowered to get the benefits they are entitled to at a time when they needed it most.
Making a difference together
In a year of huge political change, we’re proud to say that with your help we successfully influenced some key government decisions in 2024 like increasing the earnings limit on Carers Allowance so carers can earn more without losing this essential benefit. We also supported a parent carer’s fight to change England’s free school meals guidance ensuring that schools must now provide an alternative to disabled children who can’t access their free school meal in the usual way.
More recently, over 4000 shared your experiences with us by taking part in our Counting the Costs research, shedding a light on the devastating impact of delayed assessments for children with additional needs, reduced access to therapies, dwindling health and social care services and lack of suitable school places.
We are hugely grateful to the thousands of you who made your voices heard and worked with us to make positive change for families across the UK – whether through writing to your MP, participating in our surveys or speaking out in the media.
Help us be there for families when they need us in 2025
The need for Contact’s support has never been greater. Families with seriously ill and disabled children face increasingly difficult challenges, and we’re committed to being there for them every step of the way.
But as a charity, we rely on the generosity of our supporters to continue offering life-changing help.
This winter, if you’re able, please consider donating to our Lifeline Appeal. Your gift will help us provide essential advice and emotional support to families, preventing financial crises and easing the turmoil they face daily.
Alternatively, why not kick off your new year with a resolution to make a difference in 2025? You could join our DinoDay Facebook Challenge in June or sign up to Contact’s Weekly Lottery at any time of the year for the chance to win up to £10,000 every Friday!
Together, we can make 2025 a year of transformation for families with disabled children who need us most. Thank you for being an essential part of this journey.
Much of the media interest in the Bill is rightly about proposals to protect children at risk of abuse. This includes plans to introduce new registers to identify children who are not in school. Parents will no longer have an automatic right to educate their children at home if their child is subject to a child protection investigation or under a child protection plan.
The Bill will now pass through Parliament, where MPs and Peers will have an opportunity to look at it in more detail and ask for any changes. The second reading will be on Wednesday 8 January 2025.
Contact and other disability charities will make sure the Bill benefits disabled children and their families.
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.
With respect to overpayments already made, how the Department for Work and Pensions (DWP) can best support those who have accrued them.
The Independent Reviewer, Liz Sayce OBE, is now gathering evidence. Contact has been asked to contribute. We will be sharing evidence from our helpline and Counting the Costs research .
We found of those getting Carer’s Allowance (46%) that 1 in 10 say they have been overpaid. 73% said it was because of their earnings. On average, these parents had to repay the DWP £1,045. Families also told us about the impact on them, including stress/anxiety and anger.
Carer’s Leave
The Carer’s Leave Act introduced a new entitlement to unpaid leave for employees across England, Scotland and Wales. The new law came into force in April 2024.
The Employment Rights Directorate in the Department for Business and Trade is looking at how this new law is working in practice and how to improve awareness and take-up.
They have asked Contact for our views. If you have any experience of asking for carer’s leave, please email [email protected].
Transitions report
A new joint thematic review from Ofsted and CQC on Preparation for Adulthood has concluded that longstanding “systemic challenges are limiting efforts and some young people face a ‘cliff edge’ in health support once they turn 18.”
We wanted to say a huge thank you to those of you generously donated to our Lifeline Appeal this December.
We’re delighted to say that we’ve raised an incredible £28,718!
This is enough to fund over 1,248 hours of life changing one-to-one support for families with seriously ill and disabled children.
Contact’s CEO Anna says a special thank you
Watch Anna, Contact’s CEO, say a special thank you on behalf of all of us at Contact.
The difference your support makes
Our By Your Side team helped over 1,700 families in hospital last year. We had the privilege of supporting over 400,000 families and helped eligible families increase their household incomes by an average of just under £6,000 a year.
Our helpline responded to nearly 10,000 enquiries, and over 2,700 children and parent carers came to one of our family events.
For every £1 spent on the Family Finances Helpline, we put £6 in the pockets of families.
There are many reasons why families’ homes do not meet their disabled child’s needs:
32% damp, mould and poor ventilation.
31% overcrowded.
30% not enough bedrooms, so share rooms, sleep on sofa.
22% dangerous – balcony, stairs, open plan kitchen.
20% poor wheelchair access to get in or around property.
We heard from families carrying older children and teenagers with physical disabilities up and down stairs; parents sharing beds with neurodiverse children who desperately need space to regulate; and children with neurodevelopmental conditions being bumped downstairs in buggies or wheelchairs due to a broken lifts or lack of ramps.
Adaptations process not meeting household needs
Many families with disabled children need adaptations to their home. Despite this, more than a quarter (27%) of all families surveyed are not aware of the Disabled Facilities Grant, available from the council to help pay for building works, ramps, hoists. Only 12% have applied. Of the families who did apply, 43% found the process poor or very poor. Over half (57%) said the grant did not cover the full cost of the adaptations needed.
The average shortfall was £7,391. To find that money, a third (35%) had to borrow or take a loan. 30% used their savings, but more than a quarter (26%) had to do without or scale down the adaptations they really needed.
Anna Bird, CEO of Contact, said: “Poor housing is having a devastating impact on the lives of families with disabled children across the UK. The risks and dangers of some of the homes is truly staggering.”
“I feel trapped in a house that is unsafe”
Nathalie Cain from Preston is mum to James, 13, and Penny, nine. Penny has a rare genetic condition TBL1XR1 (fewer than 100 people diagnosed globally). She has a learning disability, sleep difficulties, she is non verbal and has an autism diagnosis.
Nathalie said: “I feel trapped in a house that is unsafe for my daughter to live in. Penny’s condition means she has no sense of danger, so leans forward as she walks down stairs. She has fallen from the top to the bottom and I’m terrified it will happen again. We’ve been assessed as needing a house with level access, but the only bungalows available are for over 55s. We’ve been high priority for a move since April but not offered one suitable property in that time.
“Despite the risk identified on the stairs for Penny, we are still having to go up and down them everyday. As she gets bigger and stronger the risk increases. She is also still in nappies. At the moment I either change her on her bedroom floor or during the day on the front room floor, which is totally unsuitable.”
Contact calls for Disabled Facilities Grant reform
In response to the findings, we are calling for:
An increase in the upper limit of the Disabled Facilities Grant by at least £8,000 to cover the average shortfall families are experiencing. Local authorities must promote the grant widely. The application process must be sped up by making local authorities accountable for delays.
Council banding reviews to be inclusive of disabled children. They must include mental health needs, autism and learning disability as well as physical needs.
Improved understanding of what accessibility looks like to different disabled children among housing officers. A one size all approach does not fit. A family with a child who has epilepsy may want open plan to keep a close eye at all times. But a family with a child with autism will not want open plan, due to dangers of easy access to the kitchen.
Amendment of overcrowding rules when households include someone who is neurodiverse because research shows it worsens their condition.
Council local plans to include more accessible housing in a broad sense. There is a rising special educational needs and disabilities (SEND) population. Housing for disabled children/adults is going to become more imperative.
Parents had the opportunity to present their ideas on the change needed to the Minister for Social Security and Disability, Stephen Timms MP.
Forced out of the labour market
Counting the Costs found two thirds of parent carers have given up paid work or reduced hours, on average losing £21,174 a year from their family income. This was echoed by parents at the meeting in Parliament.
Their message to MPs and the Minister was loud and clear things must improve. Ideas were put forward such as opening up special schools in the holidays to improve access to childcare.
In response to the findings Contact is calling for a child poverty strategy that increases incomes and reduces extra costs for families with disabled children.
Claiming benefits is a minefield
Counting the Costs also found that the benefit system feels like a minefield for most, especially those that don’t have support from Contact’s specialist advice services. Contact can help families get the financial support they are entitled to, making the process of claiming less stressful. However, we can’t reach everyone who needs our help.
Parent campaigner Andrew, also talked about the need to unlock £210 millions of savings held in Child Trust Funds of disabled young people. A campaign Contact is proud to support.
Thank you
Some of the feedback from parents that came to Parliament yesterday highlights why our campaign work is so important.
It was such a fantastic experience yesterday, and I really hope our voices will motivate the much needed changes in the areas we struggle.
All our circumstances and children are different, but we’re all fighting battles to get the support we need for them. I’m sure the event will have helped MPs appreciate the difficulties we face. We’re so lucky to have the support of the fantastic team at Contact.
Thank you again to everyone who completed the Counting the Costs survey. Thank you to the parents who came to Parliament and also the parents who spoke out in the BBC, in the Mirror, Sun and Express newspaper about our Counting the Costs findings.
How you can help
This week we are asking our supporters to make a donation to our Lifeline Appeal. Donations can help us boost family incomes through our specialist advice and campaigns for better financial support for families.
The government says the funding – which will go to local authorities – will help thousands of children. It’ll allow schools to adapt classrooms to meet SEND pupils’ needs and to create specialist facilities, such as sensory rooms, within mainstream schools for more intensive support.
Anna said: “We do welcome the commitment on capital investment. We know that sensory areas, specialist units for neurodivergent children, ramps and lifts are the difference between children being able to get and be and school, and not. So it will make a big difference, and this is positive.”
Anna said there will be questions to answer as to how money will flow from local authorities to schools – given demands on staff time – and how far the money will go.
She continued:
“For parents thinking about the support available to their children, how are schools going to be held to account for providing adequate support? At the moment, local schools aren’t held to account in the same way specialist schools are.
“You can have the most beautiful school with the best physical environment. But if you haven’t got the training for staff, if you haven’t got specialist provision on hand – occupational therapists, speech and language therapists, education psychologists – if the school don’t understand the needs of the children, then all of that is still not going to deliver what families need.”
62% of parent carers have given up work or reduced hours, on average losing £21,174 from their family income.
Together with enormous energy bills and rising costs of getting a diagnosis, therapies and help at school, many families with disabled children are in an impossibly precarious financial situation.
These are the findings of latest Counting the Costs survey of 4,262 families with disabled children in the UK. Thank you to everyone who took part in the survey and the parents speaking out in the media this week.
Help us be there for families
Double your donation with the Big Give
This week, we’re partnering with the Big Give, who will match every pound you donate to Contact.
We can only run our vital services with your generous support.
Families going without the basics, causing ill health and learning issues
Contact’s Counting the Costs research found that:
43% of families have gone without heating.
32% of parent carers have gone without food for themselves.
33% of disabled children have gone without therapies and 23% without specialist equipment and home adaptations in the last year.
50% have got into debt or borrowed money in the last 12 months to pay for basics.
Going without essentials is causing:
33% of parent carers say it has made them unwell.
31% said it affected how their child can learn.
20% say it has made their child’s condition worse.
Cost of disability running to thousands each year
Caring for a disabled child involves many extra costs. On average parents are paying an extra £322 a month (£3864 each year) due to their child’s condition. Some of those are getting into debt because waiting lists are long and services have been reduced or cut so they are being forced to pay for therapies, diagnosis and special equipment.
Their unique costs include:
Overall families with disabled children spend a third of their income on food. Half have children with a special diet such as ARFID or blended.
35% pay for therapies essential to their child’s condition at an extra cost of £805 per year.
44% must buy continence products at a cost of £522 each year.
9% have a child at home because they didn’t get a suitable school place this September. These parents must find an extra £27 a week to keep their child at home.
Families to tell MPs the issues they face
We’re launching the findings in parliament today at an event sponsored by Ben Coleman MP for Chelsea and Fulham, where parents will speak out about the issues.
Ben Coleman, MP for Chelsea and Fulham, said: “I know from working with disabled children, young people and their families over many years the extra costs they face and the difficulties that brings. It’s essential to give families with disabled children the opportunity to speak about the changes they want to see – whether that’s a chance to take part in paid work, better social care or educational support, or help with energy costs.
“The Child Poverty Strategy is a real opportunity to make a difference to children up and down the country. To succeed, it must recognise the additional challenges faced by those with disabilities.”
“The government needs a a child poverty strategy recognising unique costs and employment challenges”
Anna Bird, Chief Executive of Contact, said:
“Disabled children live in some of the poorest households in the UK. Many are faced with impossible financial choices every day – whether they can afford to attend their child’s hospital appointment or whether they need to turn off the freezer to save electricity for their child’s oxygen concentrator.
“Life has undoubtedly become more expensive and families with disabled children are paying an additional price for delays in assessments, lack of therapies and children at home because there are no suitable school places. This research shows the Government needs a child poverty strategy that recognizes the unique costs coupled with employment challenges that families with disabled children experience. We need to see a strategy with clear and ambitious goals to improve their household incomes and reduce essential costs.”
In response to the findings, we are calling for:
An energy social tariff for critically ill disabled children.
Breakfast clubs and childcare options that meet the needs of disabled children.
Fix Universal Credit and unlock savings held in Child Trust Funds.
Investment in support for disabled children through schools, social care and health to reduce financial burden on families.
A benefit check for every parent carer in the UK.
Our research also found that the benefit system feels like a minefield for most and many don’t trust it either. We are uniquely placed to help families get the financial support they are entitled to, making the process of claiming less stressful.
Today we launch our Lifeline Appeal in partnership with the Big Give. Please join us to prevent poverty and reduce isolation for families this winter.
Every pound you donate until Tuesday 10 December will be DOUBLED, helping to give transformative one-to-one support for families with seriously ill and disabled children.
Parents tell us they are forced to give up work to care for their children, pushing families to the brink of poverty. Sadly, many have no choice but to cut back on essentials like heating and food just to stay afloat. This is putting the whole family’s wellbeing at risk.
You can make a positive difference to their lives by donating crucial support, advice and guidance today.
A £12 donation will be DOUBLED by our Big Give match-funding partners. This could fund one hour of practical and emotional support for a family with a disabled child in a specialist hospital.
Our By Your Side Parent Adviser Ruth provides vital support to parent carers in specialist children’s hospitals across the UK. Below she explains the impact of your kind gifts.
“It’s hugely rewarding to give practical and emotional life-changing advice to families with seriously ill and disabled children who rely on specialist hospital care. We ease their anxiety and loneliness and keep families financially stable. This is really important, because every day over 100 children in the UK are diagnosed with a disability. There is more demand for Contact’s services than ever before.
Contact’s By Your Side Project
Watch By Your Side Parent Adviser Ruth talk about the vital service
“It’s amazing to meet resilient parents like, Carol who we helped through some of her family’s darkest times. Carol shares her story below. I’ve met many parent carers who never stop fighting for their disabled children’s future. You can make twice the impact for them today.
“I got in touch with Contact when I was at breaking point. I was living on virtually no sleep. Our housing was inadequate for my family’s needs, and I had nowhere to turn.
“Contact’s By Your Side parent adviser, Lynn, has been my voice of reason when I could not see the light from the dark. She gave vital information and advice. And she helped me navigate the healthcare and social care systems and every other issue I’ve had to support my family.
“Her crucial advice led to us being allocated a more suitable home. We are still facing challenges, but the support from Contact has taken some of the pressure away and has helped us to enjoy times together as a family.”
We know that not everyone is in a position to donate.
Whether you donate yourself or share information about our Big Give appeal with your friends, family and colleagues, we are grateful for any help you can give.
On Thursday 21 November, we held a comments-based Q&A in our closed Facebook group for parent carers all about education, health and care (EHC) plans in England. In particular, we invited questions about the EHC process including naming a placement/provider, assessments, drafts and annual reviews.
Below we’ve put together a summary of some common questions you asked. The answers are provided by our team of expert parent advisers.
How do I choose a new school or setting?
This will happen at the (annual) review of the EHC plan. You’ll be able to express your preference for the setting/school. The local authority, not the education setting, will decide what setting to name in section I of the EHC plan.
Following the annual review meeting, your child’s current educational setting should send the annual review paperwork to the local authority within two weeks of the meeting taking place. Based on the information received, the local authority will then make a decision. They must send you the letter notifying you of their decision, which is one of three: leave the plan unchanged; amend the plan; or cease it.
If the decision is to amend the plan, the local authority will send you a proposed amended draft EHC plan. You’ll have 15 days to not only make any amendments, but also to share your preference for a setting named in section I.
You will have another opportunity to reiterate your preference if the local authority decides to amend the plan.
What happens to my child’s EHC plan when they move settings?
Local authorities have a legal duty to review and amend an EHC plan when a child transfers from one phase of education to another.
The EHC plans of children moving from primary school to secondary school must be reviewed and amended by 15 March in the year of transfer.
Regulation 18 of the Special Educational Needs and Disability Regulations 2014 sets this out.
Will my child’s EHC plan stop if they leave education?
An EHC plan will cease if a young person is not in education or training. However, this education or training does not have to be classroom-based learning in a college. Voluntary work, traineeships and apprenticeships are all possible.
The newly-formed Education Committee has reopened its inquiry into children’s social care in England, following its closure before the General Election.
In particular, the Committee wants to know:
Is current social care provision enough to meet demand?
The specific experiences of disabled children or children with additional needs within children’s social care.
You can submit evidence to the inquiry online if you haven’t already, or you feel there has been significant landscape changes since your last submission.
In our new video, Contact’s Chair of Trustees and parent carer, Vanessa, shares the incredible impact you make and how you can help more families like hers.
Parent carers often don’t know what support they are entitled to, leaving them feeling anxious, alone and under huge financial pressure. Vanessa’s story shows how our crucial information and advice gives disabled children the best life chances.
Watch Vanessa’s video
“Contact helped me navigate the ferociously complex health system. Knowing I wasn’t alone meant I could carry on.” Vanessa, Contact’s Chair of Trustees and parent carer
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.
In a couple of weeks we are launching Counting the Costs 2024, our research on family finances. With more than 4,000 families across the UK contributing to this research, it’s clear that simple things like a family day out are out of reach for many.
Thank you if you completed the Counting the Costs survey.
We need your help again!
Ben Coleman MP is hosting a special meeting on Wednesday 4 December in Parliament to give families with disabled children the opportunity to speak about the changes they want to see – whether that’s a chance to take part in paid work, better help at school, or help with energy costs.
We need your help!
It’s important we get lots of MPs to the meeting to hear from families.
Outlining her vision for a school system where all children feel like they belong, she said that a sole focus on achieving is doomed to fail. She acknowledged that chasing a narrow set of standards causes children with SEND to get swept to the side. Addressing the school environment so that schools are a welcoming, engaging and inclusive environments for all pupils will also be key for tackling school absence.
Bold reform is long overdue.
The Disabled Children’s Partnership’s, which Contact is a leading member, responded to the announced “bold reform” with the following statement:
We are encouraged by what the Secretary of State has said about reforming the school system so that it works for all children, including disabled children and those with special educational needs. We agree that bold reform is long overdue.
Bold reform must mean a culture change in schools, colleges and local authorities; it must not mean a weakening of children’s vital existing rights and protections.
As the Secretary of State said, we need to see a wider ambition for our schools than just exam results; one that focuses on wellbeing and meeting the needs of all children. Early years providers, schools and colleges must have the money, resources and expertise, including access to outside specialist support, to enable all children to thrive.
Parents must be seen as partners
Local authorities and the health service must work with them to provide joined-up support, including the wider provision families of disabled children need. Parents must be seen as partners – and as experts in their children – not as problems to be managed. And this must all be underpinned by an accountability system which incentivises local authorities to maintain high standards for children with SEND, rather than relying on parents to battle for support and hold schools and councils to account.
Rebuild parent’s trust
We have long argued there is a need to rebuild parent’s trust in the system. The way to do that is to build a system that families can see will meet the needs of their children and allow children to thrive. We know this is all easier to say than to deliver.
It is vital that the government works with families, and experts to get this right. As the largest and most diverse coalition in the sector – bringing together charities, professional bodies, young people themselves and parent groups – the Disabled Children’s Partnership stands ready to help.
The Public Accounts Committee examines whether the government is getting value for money for the work it’s doing. This inquiry aims to establish whether the government’s spending on special education is delivering the results children need. Recently, the National Audit Office found that the SEN system in England is in urgent need of reform.
Based on this, the inquiry is now looking at the following:
Performance of the system.
The overall picture on the support available and outcomes achieved for those with SEN.
Government action to create a sustainable SEN system and restore confidence.
Get the latest SEND updates, benefits advice, practical help caring for your child, plus free workshops and family events in our weekly email newsletter.
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