Category: Campaigns


There has been a media report that the government is due to publish its proposals for major changes to the special educational needs system in England.


The Guardian newspaper article says that the Government will be publishing a White Paper in the Spring to help reduce the deficits that local authorities have.


Contact is concerned that this is before ministers and officials have had a chance to speak to parents, young people and charities.


Imogen Steele, Contact’s Policy lead for Education, said: “Contact would strongly oppose proposals which reduce the rights of children with disabilities and additional needs.


“We know that short term cost cutting, leads to greater need and higher costs in the future.


“We want to see standardised SEN support readily available across mainstream schools. This would include small group support, adult support during break time, visual cues such as pictures and task boards and access to emotional support including a class exit card. We also must see education, health and social care working together to ensure needs are met at the earliest stage and a well-trained workforce, with the ability for schools to call in expertise as needed.”

Energy regulator Ofgem has announced that for the third time in a row, the energy price cap will rise in the next quarter of the year.

From April 2025, the energy price cap will be set at £1,849. That’s a rise of 6.4% from the current price cap.

It is important to be aware that the cap is not a limit on your energy bill. It is a limit on what the supplier can charge for each unit of energy, so that average usage at that unit rate won’t exceed a given annual cost. If your energy usage is above average, it could exceed the price cap.

The energy price cap applies in England, Scotland and Wales, but not in Northern Ireland. Families in Northern Ireland can use the Consumer Council’s free price comparison tool to check the prices of all five providers and get the best deal.

What can I do if I’m worried about bills?

Consumer expert Martin Lewis suggests looking into whether you can find a fixed tariff less than today’s price cap. That would mean immediate savings and more as time goes on.

You can find advice on our webpage about getting help with energy bills. This includes through the Warm Home Discount Scheme or hardship grants from your supplier.

Contact calls for social tariffs

On Monday, Contact’s Head of Policy Una Summerson will meet energy officials from the government to raise our concerns about the impact of rising fuel bills on families with disabled children.

We continue to call for a social tariffs for disabled households. These families need to use more energy than average to keep vital equipment going and homes warm enough for children with health conditions.


Many families with disabled children need adaptations to their home, whether they live in private rented, social housing or they own their property.

Contact’s Counting the Costs research found that almost a third of families with a disabled child live in a home that does not meet the needs of their child. Of those, 43% say it needs adaptations.

If you need to adapt your home to make it easier for you or your child to manage, you may be entitled to a Disabled Facilities Grant (or Home Improvement Grant if you live in Scotland). This can cover adaptations including building works, ramps, hoists, grab rails.

But according to our survey, 27% of families with a disabled child are not aware of the Disabled Facilities Grant (DFG). Of the families who did apply 43% found the process poor or very poor. And over half said the grant did not cover the full cost of the adaptations needed with the average shortfall being £7,391. There are also lengthy delays in the process.

Currently the maximum grant is £30,000 in England and £36,000 in Wales. The government did agree to review the upper limit of the grant following a court case involving a family with a disabled child. We are currently awaiting the outcome of the review.

Anna Bird, Chief Executive at Contact, said: “Poor housing has a devastating impact on disabled children and their families both physically and mentally. The Disabled Facilities Grant can ensure families are able to care for their child at home safely, and stops them spiralling into crisis. Our survey findings show that this system of support needs urgent attention.

“The upper limit has not risen since 2008, despite the cost of materials and building work rising dramatically in that time. This has led to families having to crowdfund or give up on their projects entirely. Delays to adaptations can worsen a child’s condition which will lead to more costly interventions in the long term.”

Claire Pemberton, mum to Emilia, who has a rare genetic condition called PTEN hamartoma tumour syndrome, has been waiting two and a half years for a downstairs bedroom and bathroom. Emilia cannot climb the stairs alone without falling. And Claire has a spinal injury which means she cannot get Emilia into a stair lift. Despite this they have been waiting since 2022 for the necessary adaptations.

Through Contact’s Change Makers programme, Claire, who lives in Staffordshire, spoke to the BBC about their situation. She is hopeful that after a long wait, work is due to start in March. She said: “It will be life changing once the work is completed.”


Today Contact’s Policy lead for Schools, Imogen Steele, gave evidence to the Education Select Committee’s inquiry into Solving the Special Educational Needs and Disabilities (SEND) crisis in England.


Imogen has been working with other charities and organisations including Special Needs Jungle and Ipsea to come up with solutions to improve the education system for children with additional needs.

Solutions


At an evidence hearing in parliament today, she was quizzed by MPs about Contact’s call for SEN support to be put on a statutory footing. This would mean that extra help would be available to those children with suspected additional needs, without the need for an Education, Health and Care Plan (EHCP). That support could be small group sessions, access to emotional and social help or access to a speech and language therapist. The committee heard that funding for SEN support has not increased in 15 years, and could be one of the factors driving the increase in demand for EHCPs.

Action is urgent


Imogen said: “We are confident that with the right action, meaningful and sustainable change is possible for children and young people with Special Educational Needs and Disabilities (SEND). Early support is key, as well as good advice and information. Parents knowing that schools will provide a certain level of extra support for children without the need for an Education Health and Care Plan. This could all make a huge difference.


“It’s good the government is genuinely listening to help shape their plans for solving the crisis. But action is urgent. We hear on our helpline everyday of children and families being let down.”


Imogen also made the case for joint accountability for special educational needs provision.

Imogen added: “There should be consequences for local authorities which are routinely not complying with the law.”

She also spoke about the importance of home to school transport for many families and our campaign to close the loophole which means many 16 year olds suddenly lose their transport entitlement despite the law saying that they need to be in school or college until the age of 18.


We have submitted written evidence to the Education select committee, which will now speak to local authorities and schools as part of the next stage of their inquiry.


The Chair of the Public Accounts Committee, Sir Geoffrey Clifton-Brown MP, is backing calls for automatic payments of unclaimed Child Trust Funds (CTFs) if they haven’t been claimed by the account holder’s 21st birthday.  

Contact supports the goal of ensuring that savings held in CTFs reach their rightful owners – this must include savers without the mental capacity to manage their own finances. 

Continued injustice

Maria Scholey, Contact’s Policy lead on Child Trust Funds, said: “We welcome Sir Geoffrey Clifton-Brown MP shining a spotlight on the issue of unclaimed Child Trust Funds. There is a lot of work to be done in making young people aware they have money sitting in these funds that could be of great benefit. 

“Sadly for young disabled people who lack mental capacity they are not only faced with this barrier. They are also required to apply through an overly complicated process to access their money. The previous government failed to take the action needed to bring an end to this continued injustice. We are now urging Labour to look at the solutions that we have presented (for example extending the appointee scheme or adopting the industry process already in use by several providers) and to resolve this issue once and for all. The future of young disabled people matters. Their savings must too.”

Parent led campaign

Over 80,000 disabled young people are currently at risk of being locked out of £210million of their own savings, due to the difficult and often costly, process required to access them. Contact are proud supporters of a parent led campaign run by Andrew Turner, which is asking the government to resolve this. 

Child Trust Funds were designed to help incentivise parents to save for their child’s future. Unfortunately, in what has since been described as a ‘mistake’, no provision was made for if the child did not have capacity to manage their own money at 18.  

Andrew Turner has campaigned with Contact’s full support for many years to find a solution that protects the rights of disabled young people, whilst not placing unnecessary extra burden on their loving and caring families.  


Today the Public Accounts Committee has published its report into the SEND emergency together with recommendations for addressing it.


Angie Fenn, Contact’s Head of Information and Advice, said: “Today’s report from the Public Accounts Committee highlights what families with disabled children have been telling us for many years. There is overwhelming evidence of the SEND system in crisis. What we need now are urgent solutions and the committee’s recommendations and deadlines are welcome. Better data about the growing need and future planning of support services is essential. We have long called for education, health and social care to work more closely to provide support to disabled children so they are helped both in and out of school. We are hopeful that a clearer idea of what inclusion looks like and how it will be resourced will come from the Education Select Committee’s much needed SEND inquiry.”


Contact’s SEN policy lead Imogen Steele will give evidence to the Education Select Committee’s SEND Crisis inquiry later this month. We will ensure parents views are represented, reporting information and experiences we receive on our helpline and other frontline services.


Contact’s three asks to improve the SEND system offer solutions to the SEND crisis. We’d like to see duties placed on schools to provide a certain level of special educational support to ensure more children have their needs met without the need for an EHC plan. We need greater accountability in the system. And investment in schools’ special education workforce is also urgent. The recent moves to train and recruit more educational psychologists are welcome.


The Public Accounts Committee also published data on Education Health and Care Plans, which shows huge discrepancies between each local authority area. For example in Portsmouth just 1.6% of EHCPs are issued in the 20 week timeframe, but in neighbouring Southampton it is 100%. In Derbyshire 17.8% are done in the timeframe, with neighbouring Nottinghamshire on 32.3%.


The account committee rightly says that “rates of even 80 and 90% should be considered inadequate given the uncertainty and anxiety the delays can create for families.”


Today in parliament, MPs will discuss the government’s new Children’s Wellbeing and Schools Bill for England.

Much of the media interest in the Bill is about proposals to protect children at risk of abuse. This includes plans to introduce new registers to identify children who are not in school. But the Bill is wide ranging. It also includes measures on breakfast clubs and branded school uniform; attendance of children at school; inspections of schools and colleges; and school admissions.

Contact has been looking at the detail of the Bill. And we have been briefing MPs about some of our concerns and those that parent carers have raised with us. In particular, we are urging the government to ensure the bill doesn’t discriminate against disabled children home schooled due to a lack of suitable school places available.

We urge the government to consider the Bill’s impact on disabled children

Una Summerson, Head of Policy at disability charity Contact, says: “We welcome the government’s focus on improving children’s lives in the Children’s Wellbeing and Schools Bill or England. There is much to applaud in it. As it progresses through parliament, we would urge the government to pay particular attention to how it will impact disabled children. Getting it right for disabled children, greatly benefits all children.

“The government must ensure equal access to breakfast clubs for disabled children. Any exemptions must be carefully considered so as not to cause discrimination. We would also urge the government to look again at its proposals on home education, as there may be unintended consequences for disabled children. It doesn’t seem fair that parents forced to home school 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.

“The bill provides a welcome opportunity to end the use of seclusion rooms in schools. The harm caused to children put in seclusion is great. And research shows those with additional needs are disproportionately subjected to the measure. The changes proposed for academies to bring them in line with other state schools are also positive. Research shows that academies have not always been beneficial to children with additional needs, as the school can act outside the rules and duties of the local authority. The changes should ensure academies are more welcoming to children with special educational needs.”

Last October the government announced an independent review into the overpayment of Carer’s Allowance related to earnings.

Contact’s Counting the Costs 2024 research found those of you getting Carer’s Allowance, 1 in 10 had been overpaid. On average, having to repay the Benefits Office £1,045.

Please take our short survey about overpayments of Carer’s Allowance and tell us what you think the government should do about it.

Take our survey and tell us how overpayments are affecting you by 10am, Thursday 16 January.

We will collate your answers and share them with the independent review on Monday 20 January 2025.

What does the survey cover?

The survey asks 12 questions about topics the independent review is looking at, including:
• How overpayments of Carer’s Allowance linked to earnings accrued and why it happened.
• What changes can be made to reduce the risk of such overpayments accruing in future.
• How the Department for Work and Pensions (DWP) can best support those who have accrued overpayments of Carer’s Allowance.

School transport can be the glue that helps hold things together for families with disabled children but we’re hearing from more and more families with teens over the age of 16 that transport has been taken away and it’s having a damaging impact on the whole family.

And recent media coverage has helped highlight increasing numbers of young people who, without council transport, just aren’t getting to college at all and are missing out on vital education – like this family who spoke to the BBC this week about how this has impacted them, Son ‘never leaves house’ after Birmingham special needs transport cuts.

Young people over 16 do not have the same rights to free transport as children of compulsory school age, instead transport for 16-19 year olds is discretionary, and local authorities may ask parents for a contribution. Many areas are changing their transport policies for 16-19 year olds and will offer parents a personal travel budget in the first instance, rather than a seat in a school bus, minibus or taxi.

Parents tell us that this is putting them under financial pressure – that costs are unaffordable and that many have to give up work just to get their young person to college.

Help us change this

We think this is unfair and are campaigning for change. Our School transport campaign, will work alongside families to scope out the picture of home to school transport for all ages of disabled children across England and use this to influence policy, raise awareness in the media and campaign to improve school transport for disabled children and young people.

Your experience and views are important to us. If there is something you would like to say about school or college transport, please email [email protected].

If you need advice or information about transport to education have a look at our online transport information. You can also get in touch with our helpline.

The Law Commission is running seven additional consultation events over coming weeks to give more people a chance to have a say on their once in a life time proposals for reforming disabled children social care law.

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.

Online events

Evening online public event: 16 December, 7:30pm-9:00pm

Lunch time online public event (lunch time): 6 January, 12:30pm-2:00pm

In person events

Bristol, in-person public event: 18 December, 10am-12pm

London, in-person public event: 19 December, 11am-1pm

Sheffield, in-person public event: 8 January, 11am-1pm

Birmingham, in-person public event: 10 January, 12:30pm-2:30pm

Manchester, in-person public event: 13 January, 11am-1pm.

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.

The consultation closes on 20 January.

Our school transport survey closes on Monday. Here, our Research, Policy and Public Affairs Officer Rachel explains why fixing school transport is so important to her.

School transport really matters to me

Contact staff member Rachel with her husband and son

Rachel with her son and husband campaigning for Contact in Westminster Hall


Without school transport, I wouldn’t be working here at Contact. Instead I would be driving my son across London to get him to and from college.  He’s 20, and he goes to the nearest college for him, but it’s six miles away and he couldn’t possibly travel on his own.

But transport is a postcode lottery. I know of many families having to spend hours each day, time and money they cannot afford,  just to get their child to the education they are entitled to.

That’s why our Transport Matters survey really matters to me. It looks at the effect of school transport on families – what’s working and what isn’t – and will give us the evidence needed for our campaign.

We’ve had a good response – so thank you to everyone who’s taken part so far! But I know there are many more families out there that we need to hear from, and this is the final chance to reach them.

Just another survey?

I know that if I spend time on a survey, I want it to make a difference.

It’s important for you to know that we are ready to put the results of this survey to good use. We are speaking with press and parliament to raise awareness of the issues and to campaign for change.

How can I help?

If you haven’t already, please take our Transport Matters Survey now!

The survey closes on Monday 18th November, 10am.  By taking part, you’ll also have a chance to win one of 10 vouchers worth £50 each.

School transport can be the difference between coping and crisis for families with disabled children. More and more families with teens over the age of 16 tell us that transport to school or college has been taken away just because of their age. 

Take our Transport Matters Survey to tell us about your experiences.  

Transport rights for over 16s

A young person over 16 does not have the same rights to free transport as children of compulsory school age, even though 16 and 17 year olds must stay in education or training.

Instead, transport for 16-19 year olds is discretionary, and local authorities may ask parents for a contribution. Young people’s transport needs may be reassessed at this age and travel arrangements may change, even when learners stay on at the same school.

Young adults aged 19 and over may be entitled to free transport in some circumstances, and parents cannot be made to provide transport for this age group

Why should age matter?

Contact trustee, Ramandeep’s son has been on a school bus since he was young – it always worked well and meant he arrived at school happy and ready to learn.  But this has all changed just because of his age.   

My son always had transport provided to get to school, but now that he has turned 17 transport has been stopped – despite there being no change to his needs or where he goes to school. This leaves us in the difficult situation of trying to cover a 20-mile round trip every day, just to get him to the education he is entitled to.” 

I support the Transport Matters campaign that will raise awareness of the issues around transport and campaign for change for people like my son.  

Tell us how transport affects you

When transport is not provided for disabled youngsters it can have a huge impact on the whole family; with parents having to give up work, paying high costs for taxis, siblings missing out on school hours and some disabled students not being able to get to school or college at all.  

We can’t let austerity erode another vital service for disabled young people . Our Transport Matters campaign, funded by the Motability Foundation, will find out how transport is affecting families and campaign for change. 

If you need advice or information about transport to education have a look at our online transport information. You can also get in touch with our helpline. 

There are just two weeks left to share your views in our school and college transport survey, Transport Matters.

This is your opportunity to tell us more about your experiences so together we can campaign to make improvements.

Catch up on our school transport Q&A

Last month we ran a live Q&A session in our private (closed) Facebook group. Our parent advisers answered your questions about everything from eligibility decisions to inappropriate provision.

You can now read through all the questions and answers under the post. (You will have to be a member of our group. Joining is easy – simply answer the three questions and if you’re eligible, we’ll accept your membership).

And if you can’t find the information you’re looking for, visit our school and college transport webpages for more advice.

More about our transport survey

We know that transport to school and college is often the glue that holds families together. But so many families are going without.

We want to gather evidence on the multiple reasons for this, so we can campaign for change.

The survey is for parent carers with disabled children or those with additional needs aged 0 – 25. It should take no more than 15 minutes to complete. The deadline is Monday 18 November at 10am.

There is an opportunity at the end to win one of 10 vouchers worth £50 each.

Chancellor Rachel Reeves MP has today announced an increase in the Carer’s Allowance earnings limit in her first budget.

The earnings limit – the maximum amount a carer can earn a week while getting Carer’s Allowance – will raise to £196 per week (16 hours at the National Minimum Wage) from next April. The earnings limit will also increase in line with any future increases in the National Minimum Wage.

Una Summerson, Head of Policy at Contact, says:

“Many carers will be encouraged to hear that the care they give to their disabled and seriously ill relatives has been recognised at long last in the Chancellors budget today. Increasing the Carer’s Allowance earnings cap – by £45 – is unprecedented and will be welcome news to the families we support. It is something that Contact and parent carers have been campaigning on for years. Today’s announcement means that carers will now be able to earn over £10k a year without losing an essential benefit.

“We also look forward to hearing more from the independent review into Carer’s Allowance overpayments and about the government’s plans to look at the current Carers Allowance earnings cliff-edge, which means if carers go over the earning cap by just one penny they lose all of their Carer’s Allowance.

“Contact also welcomes the announcement in today’s budget for SEND provision in schools across England and a promised £1 billion uplift in spending.”

Tomorrow, Wednesday 30 October, Chancellor Rachel Reeves will present the new Labour government’s first Budget Statement to parliament.

We have started to hear some of the commitments she will make. These include announcements over the weekend to invest in rebuilding crumbling schools, help to increase the number of nurseries and money for breakfast clubs.  Trialling a new kinship allowance is also being funded which could help some family members who look after disabled children.

All these measures are welcome, but families with disabled children have heard the Chancellor promise a Budget of ‘real ambition’ and are asking – will the Budget be ambitious enough for families like theirs?  

With the support of parent carers like Samantha, Contact has written to Chancellor calling for an energy social tariff for families who are running lifesaving equipment at home.

Read our letter to the Chancellor here.

We have also written to the Minister for Early Years urging him to make every breakfast club accessible to disabled children.

Think Big

Disabled children deserve a government prepared to think big and build a society where everyone has equal opportunities. That’s why Contact set out our Roadmap for government which we think would make a big difference to families, including:

T


The National Audit Office has today published a report into the Special Educational Needs (SEN) system in England. The report says the system is not delivering better outcomes for children, is financially unsustainable and should be reformed.

It comes after a number of other reports highlighting the crisis in the SEN system.

Anna Bird, Chief Executive of Contact, said: “The National Audit Office report’s findings will come as no surprise to families with disabled children who are living this reality every day, with their children being failed and prevented from reaching their full potential. It is what we hear from many of you each week on our helpline. This failure has come at a cost because delays in support lead to very expensive crisis interventions.

“We welcome the NAO’s suggestion of cross department working, which was always the intention of the Children and Families Act 2014. And we agree that investment in mainstream schools will help make them more inclusive and reduce costly interventions. We would caution that if reform does take place, it must be done in consultation with parents and it is imperative children don’t lose important legal rights.”

The new government has promised to reform the SEND system but has said it will take time. They say it is skewed towards specialist and over reliance on EHCPs. They want to invest in mainstream to increase inclusivity in different ways including encouraging them to set up SEN units.  

Contact has developed 3 asks to improve the SEN system, which we are promoting with MPs and government ministers.

Need advice?

We have a wealth of information for parents to help get support for your child in school.

The government has announced an independent review into the overpayment of Carer’s Allowance.

Parent carers are among the 156,000 unpaid carers from whom the Department for Work and Pensions (DWP) is attempting to claw back overpayments. Many are having to pay back hundreds or in some cases thousands of pounds, pushing them into financial hardship.

Anna Bird, Contact’s Chief Executive, said:

“Contact welcomes the government’s review of Carer’s Allowance overpayments. For many years, we have been highlighting the cliff edge of the Carer’s Allowance earnings limit. Not only is it a disincentive to work, it also leads to overpayments, which can add to the stress and financial difficulties that families with disabled children are under.”

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

By this stage, the overpayment can amount to a significant sum. We have heard from families who have gone over the threshold of the earnings limit by a few pence, but have to pay the full amount of the allowance back.

Other parents have contacted the DWP to inform them of a change in circumstance, only for officials to say there is a backlog, and it could take weeks to update the system. So despite doing everything correctly and notifying the department, carers are wrongly receiving their allowance.

The government review will look at why the overpayments were made, and what can be done to stop it happening.

Children facing “huge” waits for assessments by community and mental health services are being “robbed of their childhood”, according to the Children’s Commissioner for England.

In her latest report, “Waiting times for assessment and support for autism, ADHD and other neurodevelopmental conditions”, Dame Rachel De Souza found 400,000 children with suspected neurodevelopmental conditions are waiting for their first appointment with community health services.

“Children and families left in the lurch”

Thousands of children were waiting more than two years. One in six had waited more than four years, the equivalent to a full key stage in their education.

Around 34,000 children were waiting for their first contact with learning disability and autism services in child and adolescent mental health services (CAHMS), the report found.

Children referred for Down syndrome assessments waited the longest, an average of two years and seven months. Those referred with ‘organic brain disorder’ waited an average of one year and four months. It took up to eight months to see the epilepsy/neurological service.

“Children and families are often left in the lurch, expected to cope by themselves while they wait,” Dame de Souza said.

What does Dame de Souza’s report recommend to government?

Dame de Souza’s report recommends:

What does the Commissioner do and what powers does she have?

The office of the Children’s Commissioner is a national, independent organisation. It has statutory powers and a legal duty to promote and protect the rights, views, and interests of all children in England in accordance with the United Nations Convention on the Rights of the Child (UNCRC).

The commissioner provides advice to the government on how policies legislation may affect children’s rights.