Through Your Voice, we provide parents with a platform to respond to current hot topics from their own lived experience. Together, we can make sure parent’s concerns are front and centre in the ongoing conversations that shape support for children with additional needs.
This September, the Law Commission aims to publish its report following a consultation on major plans to reform disabled children’s social care. We welcomed many of the proposals, which aligned with our social care asks for a new single legal duty to assess disabled children; a new legal framework for disabled children’s social care; and national eligibility criteria.
In this Your Voice, parent Rebecca explains how current social care is failing her family.
You might think care services have stepped up – that’s far from the reality
“My beautiful five-year-old son Keir has very complex needs that require round the clock care. He has a rare life-limiting genetic condition and drug-resistant epilepsy. He can’t walk and is blind. I sleep downstairs with him to manage his nightly seizures, which are getting worse. We use a hoist to move him.
“Keir also has gut dystonia, which causes him significant bowel pain and difficulty in passing stools. To manage this, I give Keir daily suppositories/enemas and feed him a combination of blended food and milk through a pump. For his stomach pain, we administer morphine and when needed, sedate Keir with Chloral Hydrate. Keir’s dystonia extends to his limbs and causes his hands and feet to often shake. Again, we administer various medicines to try and reduce these episodes. Keir is under neuro, gastro, and palliative care consultants at Birmingham Children’s Hospital.
“Given the scale of Keir’s needs, you might reasonably think that care services have stepped up to help us. But that’s far from the reality. Since Keir was turned down for NHS continuing care funding in June 2024, we’ve been stranded in a grim no-man’s land between health and social care services with no support. We’re told Keir is ‘too complex’ for social care and ‘not severe enough’ for continuing care funding. We get a tiny four-hour a week short breaks package, only recently upped from two hours, after I repeatedly requested more help. It’s nowhere near enough.
Right now, help is coming from nowhere
“I’m exhausted and really struggling. I want to sleep at least one night a week. I need help to hoist Keir before and after school. I’d love to be a teacher again and work more to support and empower my family. I don’t mind where this help comes from. But right now, it’s not coming from anywhere.
“Children’s social care law fails too many disabled children. A Disabled Children’s Partnership report found just 1 in 7 families got the correct level of social care support. One in four were told their disabled child did not meet the threshold for a social care assessment. New research by the deaf-blind charity Sense found more than half of families with disabled children struggled to get support and services that meet their child’s needs.
“This is why I fully back the Law Commission’s proposals and Contact’s social care asks. Families like ours desperately need these reforms because, without them, we get little or no support at all.”
We had more than 3,000 responses to our Transport Matters survey – thank you to everyone who answered.
We will share the findings at a meeting in Parliament on Monday 2 June.
At this meeting, hosted by Jen Craft MP, families have an opportunity to speak out about school transport. This will give MPs the chance to hear first-hand from families how important transport is and the impact if it’s stopped or changed when a disabled student turns 16.
Ben Maguire, MP for North Cornwall, sponsored the roundtable event. Our Chief Executive Anna Bird spoke alongside parents, and this is what she said:
“There’s nothing ‘special’ about a child having a school place. Enjoying school. Feeling safe there. Learning. But the reality is that for too many children, these things are out of reach.
“Nurseries, schools and colleges should provide extra support – called SEN Support – for children with SEND who need it. SEN Support is there to make local schools more inclusive. Schools get funding to put it in place. Government guidance tells schools how it should work. But it’s not happening.
“So what do we do about it? We think there is a very simple solution. We’re asking Government to amend section 66 of the Children and Families Act 2014 so that all schools, colleges and nurseries have a primary legal duty to:
Identify a child’s special educational needs.
Identify the support required.
Deliver and review the support.
“If education settings must, instead of should, provide SEN Support, it will create a fundamental shift in the system. It will mean mainstream schools become more inclusive and more children can be educated locally. Fewer families will need to go through a painful, lengthy legal process to get an EHCP. Schools that fail to provide support will be held to account more effectively.
“The provisions are already there, we just want them to have more teeth. And we can do that with a simple amendment to the current act. This is the message Contact, IPSEA and eight fantastic parent campaigners took to Westminster today.
“If the government is serious about making schools more inclusive, strengthening SEN support is the place to start.”
Parents of children with special educational needs and disabilities (SEND) from across England attended parliament today to discuss ways to promote inclusion in mainstream schools.
This follows research with 2,000 families that shows just 9% of pupils with SEND get speech and language support. 60% avoided school as a result of not having the right support in place.
The parents back calls from Contact and IPSEA to strengthen SEN support by making it a legal requirement.
Children missing out when staff unavailable
SEN support is help in school for children who have SEND, but don’t have an education health and care (EHC) plan. It includes help such as small group work, adult help during break and lunchtimes and speech and language support.
Laura Bancroft’s son Aiden is autistic and has situational mutism. Laura said: “Despite his challenges, Aiden is academically capable and a rule-follower. But that’s not the full picture. He holds it all together during the school day, but comes crashing down at home. He becomes overwhelmed, anxious and emotional and more recently has developed panic attacks.
“The support he is supposed to have at school includes small group activities, allowing him to sit at the end of the row during assembly, and five-minute sensory breaks. But this is not always possible. It depends on the number of teachers and teaching assistants and what is happening on a particular day. He is often left struggling in silence, unable to express when he is overwhelmed or when his needs aren’t being met. This is heartbreaking as a parent to witness, knowing that the support he needs is simply not available.
“As we approach the transition to secondary school in just over two years, my family and his current school all agree that my son’s needs are not severe enough for a specialist school. But we are also acutely aware that, without the right support, he will struggle to cope in a mainstream setting. This is a real concern for us and without the right support his difficulties will just become more severe.”
Lack of support leading to absence, avoidance and exclusion
Ben Maguire, MP for North Cornwall, sponsored the roundtable event. Mr Maguire said: “The lack of adequate SEN support in schools is driving requests for EHC plans, as parents and schools seek formal assessments to secure the support children should already be receiving. Without the right SEN provision in place, we see higher rates of school absence, avoidance and exclusions. Too many children are being left behind.
“Investing in early intervention, properly trained staff, and better-resourced schools will not only improve outcomes for children with SEN, but also reduce costly crisis interventions and the growing reliance on EHC plans. No parent should have to fight for their child’s right to an education. The Government must act now to deliver a system that works for every child, every family, and every school.”
Anna Bird, Chief Executive at Contact, said: “The government says it wants more children to feel supported and included at mainstream school. It’s important that we get that right. We are calling for SEN support to be made a stronger part of a school’s duties. We believe this will ensure more children are able to enjoy and take full part in school without going through a legal process to get an EHC plan.”
1 in 5 children with SEN not getting SEN support
Contact and IPSEA surveyed 2,000 families with children who have SEND, but not an EHC plan, in February 2025. Our survey found that there is not enough SEN support in schools. This is leading many families to seek an EHC plan to secure the support their child needs.
Other key findings include:
Over a third of respondents (35%) said funding was the reason schools gave for not providing adequate SEN support.
A fifth of children with special educational needs are not getting any SEN support.
Madeleine Cassidy, Chief Executive of IPSEA, commented: “The lack of enforceability of SEN support means too many children struggle to get adequate support in mainstream schools. The sharp rise in EHC plans we see year-on-year also reflects the reality that, for many families, an EHC plan is the only route to securing the support their child needs.
“If SEN support were placed on a statutory footing – applying across early years, mainstream schools and further education settings – fewer families would need to go through the legal process of obtaining an EHC plan simply to get the right support for their child.”
We’re over the moon to share that a mum of three boys with special educational needs and disabilities (SEND) has just won £1,000 in the Contact Weekly Lottery!
Having played our charity lottery for just six months, Kimberly was lost for words when she found out. Listen to Contact’s Beena break the good news over the phone:
Listen to Kimberly’s reaction
The Stoke-on-Trent mum is now looking forward to treating her boys to a special family holiday. She says: “Having three SEN children, it’s quite difficult to keep them busy!”
And if you’re considering playing our lottery, here is Kimberly’s message to you:
“You could help other disabled children, and every time you enter the draw you get a chance to win as well – so it benefits everybody!”
Parent carers winning big
Kimberly is just the latest in a string of parent carers who have hit the jackpot in the Contact Weekly Lottery — including one particularly lucky family who bagged a massive £10,000 just in time for Christmas.
In fact, we’ve given away more than £100,000 in prizes to thousands of families since launching our lottery in 2020. And if you join us, you could be next!
Sign up today for just £1 a week, and you’ll have a chance of winning between £5 and £10,000 every single Friday.
By playing the Contact Weekly Lottery, you’ll also be helping to fund our vital support services for families with disabled children. It’s a win/win!
Huge congratulations once again to Kimberly and her boys! And good luck to all our wonderful players in this week’s draw.
Parent carers who attended our first Building Resilience course from October- December 2024 got together for a coffee morning.
The Contact Cymru team are running several in-person and online events this Spring. Our workshops and drop-ins are all free and for parent carers across Wales. Take a look at what’s on offer and book your place today….
In person workshops
Eight-session Wellbeing Programme, Brecon. Starts Thursday 8th May 2025, 11:00-13:00, and continues for seven more sessions.
Our next Wellbeing programme starts in May, with sessions on Thursday mornings at the Y Gaer Museum, Art Gallery & Library in Brecon.
Led by Contact’s Parent Advisor, Sophie Barker, these sessions are fun, positive and relaxed. They will help you build confidence, manage stress and make positive changes. It’s for any parent carer who has a child with a disability or additional needs – diagnosed or not.
Wellbeing Workshop in Welshpool Wednesday 7th May 2025, 11:00-13:00
This is a one-off workshop led by Contact and supported by Credu Carers. It’s for parents and carers to have time away from their caring role to focus on themselves and prioritise their needs. Warm drinks, a buffet, and a pamper pack will be provided to all attendees.
Our online parent drop-ins are now happening on the first and third Thursdays of every month. Run by Contact volunteers, they offer a relaxed and supportive space where you can chat with others who understand your situation.
Each drop-in has a theme, but we cover other topics too. So grab a cuppa and join us from the comfort of your sofa for a few minutes or the whole hour.
May dates and topics:
1/5/2025- Finding your tribe, fitting in, making decisions 15/5/2025- Behaviour, overwhelm, meltdowns, shutdowns
For further information on any of these sessions, please contact us at [email protected] Our workshops and drop-ins are funded by the National Lottery Community Fund as part of Contact Cymru’s Building Resilience programme. Workshops are delivered in English.
Gweithdai gwanwyn a sesiynau galw heibio i deuluoedd yng Nghymru
Mae gennym ni lawer yn digwydd yng Nghymru y gwanwyn hwn. Cymerwch olwg ar yr hyn sydd ar gael ac archebwch eich lle heddiw….
Mae ein rhaglen Llesiant nesaf yn cychwyn ym mis Mai, gyda sesiynau ar fore dydd Iau yn Amgueddfa, Oriel Gelf a Llyfrgell Y Gaer yn Aberhonddu.
Wedi’u harwain gan Gynghorydd Rhieni Contact, Sophie Barker, mae’r sesiynau hyn yn hwyl, yn gadarnhaol ac yn hamddenol. Byddant yn eich helpu i fagu hyder, rheoli straen a gwneud newidiadau cadarnhaol. Mae ar gyfer unrhyw riant ofalwr sydd â phlentyn ag anabledd neu anghenion ychwanegol – wedi cael diagnosis ai peidio.
Archebwch eich lle yma neu am fwy o wybodaeth cysylltwch â Sophie Barker ar [email protected].
Gweithdy untro yw hwn sy’n cael ei arwain gan Contact a’i gefnogi gan Ofalwyr Credu. Mater i rieni a gofalwyr yw cael amser i ffwrdd o’u rôl ofalu i ganolbwyntio arnynt eu hunain a blaenoriaethu eu hanghenion. Darperir diodydd cynnes, bwffe, a phecyn maldod i bawb sy’n mynychu.
Dewch i Sgwrsio! Sesiynau Galw Heibio ar-lein i Rieni sy’n Ofalwyr
Mae ein sesiynau galw heibio ar-lein i rieni bellach yn digwydd ar y dydd Iau cyntaf a’r trydydd dydd Iau o bob mis.
Yn cael eu rhedeg gan wirfoddolwyr Contact, maen nhw’n cynnig gofod hamddenol a chefnogol lle gallwch chi sgwrsio ag eraill sy’n deall eich sefyllfa. Mae thema i bob sesiwn galw heibio, ond rydym yn ymdrin â phynciau eraill hefyd. Felly cydiwch mewn paned ac ymunwch â ni o gysur eich soffa am ychydig funudau neu’r awr gyfan.
Dyddiadau a phynciau mis Mai:
1/5/2025- Dod o hyd i’ch llwyth, ffitio i mewn, gwneud penderfyniadau 15/5/2025- Ymddygiad, gorlethu, toddi, cau i lawr
I gael rhagor o wybodaeth am unrhyw un o’r sesiynau hyn, cysylltwch â ni ar [email protected]
Ariennir ein gweithdai a’n sesiynau galw heibio gan Gronfa Gymunedol y Loteri Genedlaethol fel rhan o raglen Meithrin Cadernid Cyswllt Cymru. Darperir gweithdai yn Saesneg.
We’re looking for as many parents, carers, practitioners and supporters as possible to fill in our short survey to tell us what you think about Contact and how we come across.
We want to improve the way we communicate the work we do here at Contact, so people better understand what we offer families and people who work with disabled children and their families.
What you tell us will play a vital role in this and help us shape the way we communicate with parents, carers, supporters, professionals and other audiences.
Photograph: ASU Department of English/Creative Commons
More than 2,000 families in England responded to our survey on SEN support last month.
This shows the importance of the topic. SEN Support is also one of the top issues on our helpline. Thank you to all who completed the survey, we will share the results very soon.
We are taking the topic of SEN support to parliament.
Ben Maguire MP is hosting a meeting on Tuesday 13 May in Parliament.
This meeting will give parents the opportunity to speak about their experiences of SEN support and what changes are needed to ensure access to an inclusive education for all children.
We’ve set up a pre-written email so you can quickly and easily ask your MP to join the meeting in Parliament.
It is important that we get as many MPs to attend this meeting as possible so that they can hear from families and understand how the current SEN system can be improved and why it is so very important to do so.
We questioned over 300 parents in our bi-annual information and advice services survey. We run the survey to ensure our support services are meeting needs and to hear your feedback on what we can do to improve them.
After using our information and advice services:
95% felt better informed about how to get support.
88% felt more confident.
87% knew what their next step would be.
97% would recommend the service to others.
We also received some positive feedback:
“Contact is my go-to service to find any information regarding help for our neurodiverse 4 year old grandson.”
“Information given and the help received always correct and financially you have helped my family.”
“I have learnt everything !!! The difference this service makes has no words to describe it!!!”
“Really helpful and tried so hard to help me.”
“Accessing Contact has been a lifeline… Contact has saved my sanity.”
And we also heard some suggestions for reaching more families, including:
This month new rights for parents with babies receiving neonatal care have rolled out in England, Scotland and Wales.
Since 6 April, working parents of babies admitted to neonatal care are entitled to up to 12 weeks’ leave in addition to their maternity and paternity leave.
How does it work?
Employees are eligible if their baby enters neonatal care within 28 days of birth for a continuous seven days or longer.
Parents must use the leave within 68 weeks of birth and take leave in blocks of a week.
New right to neonatal pay
Some working parents are also entitled to neonatal pay.
Depending on length of service and earnings, some employees are eligible for up to 12 weeks’ neonatal pay of £125 a week.
Find out more
You can find out more about neonatal care leave and pay, including full eligibility criteria, on the website of the national charity Working Families. The charity Bliss supports parents of babies born premature or sick.
This morning the first 750 primary schools in England launched their free breakfast clubs as part of a national trial that runs until July.
Thousands of parents across nine regions will benefit from half an hour of free childcare before school each day. From July, breakfast clubs are expected to rollout across the country.
The government committed to funding free breakfast clubs in its manifesto, arguing that the offer will improve attendance and academic performance.
Contact urges lords to ensure clubs are accessible
We think the provision of universal free breakfast clubs is a positive step towards supporting children’s wellbeing. But we still think the bill does not sufficiently ensure that these clubs will be accessible to children with special educational needs and disabilities (SEND).
Today, the Disabled Children’s Partnership (DCP) is hosting a schools event in the House of Lords, where the Children’s Wellbeing and Schools Bill, which sets out breakfast clubs provision, is currently being debated. Our policy officer Imogen Steele is speaking at the event about the need to make the clubs inclusive.
Research from Contact and the DCP found that a third of eligible disabled children were already missing out on free school meals to which they were entitled. Barriers disabled children face include specific dietary requirements, lack of transport to get to school, and lack of specialist support staff at meal times.
We are recommending amendments to the Bill to strengthen the breakfast club provisions. This includes:
A clear requirement for schools to make reasonable adjustments so disabled children can benefit from provision, including providing specialist staff.
Duties on local authorities to co-operate with schools in delivering their duties, including ensuring home to school transport they provide allows attendance at breakfast clubs.
It can be daunting to think about how your loved one will be supported after your death.
If you or a family member are considering leaving money directly to a disabled person, you are likely to impact their entitlement to means-tested benefits and social care support. It may also leave them at risk of financial abuse.
Contact is partnering with Renaissance Legal to offer a free 1 hour webinar about planning for the future of a disabled loved one.
Date: Wednesday 21 May 2025
Time: 10 – 11am
Location: Online (a Zoom link will be sent when you book a place).
Renaissance Legal’s leading and trusted expert Philip Warford will explain how to safeguard means-tested benefits and how to provide financial security for your disabled loved one as well as the rest of the family.
The webinar will cover:
The importance of writing a Will and Letter of Wishes.
Protecting means tested benefits and support packages through trusts.
This is the biggest increase in the earnings limit since Carer’s Allowance was first introduced back in 1976. Contact has long campaigned for future increases in the National Living Wage to be tied to the earnings limit. This will now happen.
This increase will guarantee that anyone working 16 hours or less at National Living Wage is eligible for Carer’s Allowance or Carer Support Payment. They must still meet the other caring rules to qualify.
Follow the linked pages above for more information about how earnings are calculated and the other rules that you need to meet to qualify for Carer’s Allowance or the Carer Support Payment.
Annual uprating in benefits rates
This week also sees the start of the annual uprating of benefit payment rates.
Working age benefits are increasing by 1.7%. For example, the middle rate of Disability Living Allowance (DLA) care component will increase from £72.65 to £73.90 per week. The higher rate care component will increase from £108.55 to £110.40 per week.
The amount of Carer’s Allowance paid also increases from £81.90 to £83.30 per week.
Delay in higher payments starting for Universal Credit claimants
The increase in benefit rates does apply to Universal Credit. However, because of its monthly assessment period, there will be a delay before you see any increase in your Universal Credit payments.
The increase applies from the end of the first assessment period starting after 7 April. This means most Universal Credit claimants won’t see any increase until their May payment. Some will have to wait until early June.
No increase in the amount of Universal Credit received for those with transitional protection
If you get a transitional element in your Universal Credit award, the overall amount of Universal Credit you get is unlikely to increase at all.
This is because the transitional element you get is reduced by any increase in your other Universal Credit payments. This includes where an increase is due to the annual uprating in benefits rates.
Example
Alice is a lone parent whose Universal Credit includes a transitional element of £200 per month. Because of the annual uprating in benefits, her Universal Credit payments – such as her standard allowance, child element, carer element and disabled child addition – are all going to be uprated.
In Alice’s case, these increase by a combined amount of £18.37 per month. This results in £18.37 being deducted from her transitional element, reducing it from £200 to 181.63 per.
We’re looking for parents and carers who know about Contact and have used one or more of our of our services such as our helpline, parent workshops, family events, website or social media, to join one of two online focus groups taking place in April to tell us what you think about what we do and how we come across.
Whether you are relatively new to Contact or have been using our services for years, we’d like to hear from you.
We are currently taking a good look at Contact’s brand and want to make it better so more families know about us and how we can help them overcome the daily challenges they face. As someone who has already found Contact, your help to get this right will be invaluable. With your help we’ll be able to make sure that we’re using the right messages and make it easier for other parent carers to find us and know that they can turn to us if they need support.
We’re looking for 10 parent carers to join each online focus group which will take about 1 hour 15 minutes. You will only need to join one focus group. Both focus groups will take place on Wednesday 23 April at either 10:30-11:4:5 am or 1-2:15pm.
If you think you can help we’d love to hear from you! Please fill in this form with your details so we can ensure we get a good cross section of people for each focus group planned.
If you are selected to take part either of the two focus groups we are running, your name, email or phone number will be shared with the agency who will be conducting the focus groups on Contact’s behalf. The agency are called Criteria. We will not share any information about your child or family with them.
In consideration of your valuable time and to make sure no one who wants to participate is prevented from taking part because of financial constraints, we are able to offer the people who are selected to take part in the focus group a small financial incentive which will be paid after the focus group has taken place.
Disability benefit changes, squeezed education, health and social care support for children with additional needs. Add to this a liberal sprinkling of parent blame, and it’s no surprise so many parents we speak to feel like they’re being attacked from all directions.
At Contact, we believe that parents deserve to be heard on the critical issues that affect your every day. Sadly and far too often, the parent’s perspective is overlooked.
That’s why we’re launching Your Voice – a new feature on our website that amplifies the voices of parents like you.
Through Your Voice, we’ll provide parents with a platform to respond to current hot topics from their own lived experience. Together, we can make sure parent’s concerns are front and centre in the ongoing conversations that shape support for children with additional needs.
Laura’s voice on lack of mainstream school support
Our first Your Voice features Laura responding to the Channel 4 News item on Sunday about children who need more help at school, but aren’t getting it.
Laura’s son Aiden is eight and autistic, with sensory modulation disorder and selective mutism. Laura shares her views on why putting SEN support on a legal footing matters:
“Despite his needs, it has been a struggle to get Aiden much support in school. For example, he is supposed to have access to a short sensory break in school every day (despite how he may be feeling at that time). But this doesn’t always happen. Or staff rely on Aiden to ask for it, which he cannot always communicate, hence needing it to just be a part of his routine.
“Aiden masks a lot in school to try and ‘fit in’, which can be extremely tiring for him. He then comes home from school dysregulated and anxious. His school often tell us they don’t always have the staff available to allow him sensory breaks outside if needed.
“I feel like I’m being passed from one service to another, with nothing done or one service disagreeing with another. I am told school have access to certain services. Then, when I speak with school, they will inform me this isn’t the case. As I am not a professional, I can only go by information given to me by the various services/school.
“Applying for an EHC plan is a long process – my son is really struggling right now.”
“I’m now contemplating applying for an EHC plan to try and legally secure the support that he so clearly needs. But this is a long process and my son is really struggling right now. If Aiden had access to the support suggested by the professionals as part of his school routine, I feel he would come home from school a happier and more relaxed child. If the school had access to more funding, this could make a huge difference.
“Aiden will be starting secondary school in just over two years time. I feel like an EHC plan is the only route I can go down to ensure that he will get what he needs in secondary school where his communication difficulties will be even greater.”
SEN support is help available in schools to children who have SEN but don’t have an EHC plan. It includes help such as small group support, adult help during break and lunchtimes and speech and language support.
Lack of support leads to avoidance and exclusions
As a result of mainstream schools being unable to meet all of a pupil’s needs through SEN support:
20% of schools had asked for an EHC plan.
35% of parents had asked for an EHC plan.
The impact on pupils of not getting any or enough SEN support includes:
33% of children with SEN are receiving emotional SEN support including feeling fans and class exit cards.
Just 9% are getting speech, language and communication support. This was the least commonly available, despite research showing that speech and language is critical to a child’s development and wellbeing
Over a third of respondents (35%) said that funding was the reason schools gave for not providing adequate SEN support.
A fifth of children with special educational needs are not getting SEN support.
We ran the survey with the charity IPSEA. Both Contact and IPSEA provide helplines. Both have seen large increases in calls from families whose children aren’t getting the right support in school.
Contact & IPSEA call for statutory footing for SEN Support
Anna Bird, Chief Executive of Contact, spoke on Channel 4 News alongside parent carer Lauren and her son Alex.
Anna said:
“The government says it wants more children to feel supported and included at mainstream school. It’s important that we get that right. Our survey shows that the mainstream offer is currently not working for children, families or schools. This means too many children with SEN are being failed, missing school and parents forced out of paid work to deal with the fall out.
“We are calling for SEN support to be made a stronger part of a school’s duties. We believe this will ensure more children are able to enjoy and take full part in school without going through a legal process to get an EHC plan.”
Madeleine Cassidy, Chief Executive of IPSEA, commented:
“The findings from this survey reinforce what we hear at IPSEA from families every day. The lack of enforceability of SEN support means too many children struggle to get adequate support in mainstream schools. The sharp rise in EHC plans we see year-on-year also reflects the reality that, for many families, an EHC plan is the only route to securing the support their child needs.
If SEN support were placed on a statutory footing – applying across early years, mainstream schools and further education settings – fewer families would need to go through the legal process of obtaining an EHC plan simply to get the right support for their child.”
Taking the results to parliament
Contact is organising an event in parliament to give parents the opportunity to speak about their experiences of SEN support and what changes are needed. The meeting will be hosted by Ben Maguire, MP for North Cornwall.
Ben Maguire MP, said: “The findings of this survey highlight the urgent need for properly funded and effective SEN support in schools. It is deeply concerning that 21% of children with identified needs receive no support at all, leaving families struggling to access the help their children desperately need.
“The lack of adequate SEN support in schools is driving requests for EHC plans, as parents and schools seek formal assessments to secure the support children should already be receiving. Without the right SEN provision in place, we see higher rates of school absence, avoidance, and exclusions, meaning too many children are being left behind.
“Investing in early intervention, properly trained staff, and better-resourced schools will not only improve outcomes for children with SEN but will also reduce costly crisis interventions and the growing reliance on EHCPs. No parent should have to fight for their child’s right to an education. The Government must act now to deliver a system that works for every child, every family, and every school.”
The Chancellor Rachel Reeves set out further cuts to benefits today, as part of the government’s Spring Statement. These cuts will affect some families with disabled children.
All Universal Credit claimaints will see a reduction in the amount of the standard allowance by the year 29/30.
If a parent has their own disability and receives the Limited Capability for Work (LCWRA) or health element, this will either be:
Frozen until 2029-30 if they are an existing claimant.
Reduced by almost half and then frozen until 2029-30 if they claim it after April 2026.
There hasn’t been any changes announced to the carer element itself, but those claimants will see their basic element reduced.
Anna Bird, Chief Executive of Contact, said:
“Today is another financial blow to families with disabled young people, still reeling from the savage disability benefit cuts announced last week. The reductions and freezes announced today will be felt most acutely by families who can’t seek paid work due to their caring responsibilities. We are talking about lone and disabled parents who are already at much greater risk of living in poverty.
“This contradicts the statement made in the government’s Green Paper Pathways to Work, published last week, that the basic rate of Universal Credit needs to rise in line with inflation to prevent hardship.”
Keir has rare genetic condition GABRB3 and needs round-the-clock care. But the family only get four hours of support through social care. Despite council tax rises coming in April, very little of that goes into support for disabled children and their families.
Anna Bird, Chief Executive of Contact says:
“We are hearing from more and more families whose children have very complex health needs requiring round-the-clock care, who are getting very little, if any, support from social care. Some are rejected by NHS funded care. But social care also push them away, so they are left with nothing, despite very clear need.
“We know council tax is set to rise in most areas at the beginning of April. While some of that goes into children’s social care, the majority goes to privatised children’s care homes and to children’s safeguarding. So there is very little left for families caring for a critically ill and disabled child at home.
“The recent report by Lord Darzi for the NHS plan shows that there has been a 205% increase in the number of children living with life-limiting conditions. But our research shows that local authorities are not tracking these numbers to help them plan for their care or the support for their families. It is a gross failure in their legal duty. And it helps to explain why parents talk about the battle to get help for their child, whether that’s a personal budget, a short break or overnight care.
“That’s why we support the Law Commission’s proposals to improve the law around disabled children’s social care. Families like Becci’s don’t want special treatment they want a fairer, more accessible, system of social care that delivers support when they need it.”
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