Category: Other

The rules that govern when a young disabled person in education can claim Universal Credit are extremely complex . That’s why advisers from our Family Finance Team are inviting you to ask any questions you have about this at a special Q&A session on Thursday 18th January between 10am – 11.30 am on our Facebook Group.

How to join our Facebook group

Joining our Facebook Group is easy. Just answer a few simple questions to register and you’re in!

Join us there on Thursday 18th January from 10am-11.30am when our team of Family Finance advisers will be waiting to answer your questions. Put the date in your diary!

The Universal Credit rules

The benefit rules prevent most young people in education from getting Universal Credit. However, some disabled students can qualify for Universal Credit. This includes young people who either:

Get advice before claiming Universal Credit

Even if your child falls into one of these groups and can claim Universal Credit it’s not always a good idea to do so. This is because they will stop being treated as a dependent child and as a result any Child Benefit, Child Tax Credit or other payments that you receive for them as dependent child will stop.

Making a ‘credits only’ claim for new style Employment and Support Allowance

Contact recommends that disabled teenagers undergo a work capability assessment when they turn 16 to try to establish that they have a limited capability for work early on. Doing this can increase their chances of being able to claim Universal Credit at a later date if they either change courses or stay in non-advanced education past the age of 19.

But here’s the catch: if you simply ask the DWP to carry out a work capability assessment, they are likely to refuse. The only way to make sure an assessment takes place is by making a ‘credits-only’ claim for new-style ESA. Your child won’t qualify for the ESA payment itself, but the DWP will have to carry out a work capability assessment as part of the claims process and this may help them to get Universal Credit at a later date.

Can’t make 18 January?

We have lots of information about claiming Universal Credit for a young person, on our website.

We’re really happy to be recruiting for a new role to join our ambitious policy and campaigns team!

We’re looking for a Research, Policy & Public Affairs Officer (14 or 17.5 hours per week, home or office based).

The role is a fixed term contract for three years. The closing date is Monday 15 January at 10am. The hours per week are flexible and working term time is also available.

The role would be suitable for a parent carer wanting to take a step back into paid employment. We’ll offer training, so don’t let that put you off applying.

You can find more information about the role, job pack and application form on the Work for Contact section of our website.

Tips on completing application form

The section called ‘General experience and further information’ is the most important section.  We use this to decide who to interview for interview.

Last year, we had the privilege of supporting 291,000 families across England, ScotlandWales and Northern Ireland with our advice and information. This includes helping eligible families increase their household incomes by an average £5,400 a year, through our Family Finances team.

We held over 103 family events which were enjoyed by 2,300 parent carers and children and our workshops, webinars, outreach or drop-ins were attended by over 5,500 parents and professionals.

More of you than ever before made use of our Listening Ear service to find emotional support, practical advice and a shoulder to cry on and over 20,000 of you are members of our private Facebook group sharing advice and supporting each other.

Help us be there for more families in 2024

We just wouldn’t be able to do what we do without the generosity of our supporters so, if you can, please consider helping us to be there for more families in 2024.

You could make a one-off donation or set up a regular monthly contribution. Or why not make a new year’s resolution to take part in our DinoDay Facebook Challenge in 2024. Join our weekly lottery and, like parent carer Samantha, you could have the chance of winning up to £10,000 every Friday!

Together we are making a difference for families with disabled children

Huge thanks to the thousands of you who took action last year to improve things for your family and others by writing to your MP, filling in one of our surveys or speaking out in the media. And with more than 200 of you becoming a Contact Changemaker, we continue to make sure parent carers are at the heart of our policy and campaigning work.

Throughout 2023 we proudly supported two parent-led campaigns: One to put an end to disabled young people being unfairly locked out of their Child Trust Fund savings, the other to make sure all eligible children have access to the free school lunch they are entitled to which was recently backed by Baroness Grey-Thompson.

We also worked with you to highlight the lack of holiday childcare for disabled children and the worrying 21% increase in calls to our helpline about children being excluded from school.

We continued to speak out about support for carers, the cost of living crisis and soaring energy prices.

And it was the year we finally saw the Department for Education publish its revised statutory home to school transport guidance for children of compulsory school age in England following Contact’s School Transport Inquiry.

More achievements in 2023

Take care and remember, we’re here for you in 2024 whatever your child’s condition and whenever you need us.

l

From all of us here at Contact, we want to wish all our families a very Happy Christmas!

We hope you’re enjoying the holidays. But remember, if you’re looking for help while our helpline is closed until Tuesday 2 January 2024, you’ll find lots of advice and support on our website.

Our Chatbot Charlie can help guide you through our online information and advice so you find the support you need quickly and easily, whenever you need it – 24 hours a day, 7 days a week. Look out for Charlie at the bottom of our website on the right hand side.

Happy Christmas everyone!

The government’s annual Special Educational Needs and Disability (SEND) Statistics show that 98% of parents win on appeal once they get to tribunal – meaning that just 2 per cent of refusals by councils to provide SEND support were upheld in tribunal decisions last year.

At the same time the number of SEND tribunals has gone up by a record 24 per cent.

Earlier this year we told you about a report by Disabled Children’s Partnership (DCP) and Pro Bono Economics which found that lost SEND tribunals cost taxpayers £60 million in 2021-22.

The statistics published by the government today show that the situation has got even worse.

Anna Bird, Contact’s CEO and Chair of the Disabled Children’s Partnership says: “Even more parents are having to go through the expense and stress of a Tribunal hearing despite Tribunals finding in their favour in a staggering 98% of cases. 

“This shows the system is fundamentally broken.  The government and local councils must take action to make sure the right, lawful decisions are made first time, so that parents do not have to take legal action to get the support their children need and are entitled to, and to prevent this needless waste of public money.”

The statistics published today illustrate what we at Contact already know: that parents know what support their children need, and have to fight tooth and nail to get it.

The DCP is calling for government to ringfence resources for early information, advice and support for parents navigating the system; better training for local council staff so they make the right, lawful decisions first time and stronger accountability.

Information for affected families

Find out how to get an EHC plan for your child.

If you disagree with a council’s decision about an EHC needs assessment or EHC plan, read our advice on mediation and appeals to the SEND Tribunal.

We made someone’s Christmas last week when we called to tell them they’d won £1,000 in the Contact Weekly Lottery! Samantha from Manchester was in disbelief when she matched five numbers in our draw to land herself this fantastic windfall.

And you could be next if you sign up today!

Samantha, whose two daughters have ADHD and her eldest is also autistic, discovered our weekly lottery through Facebook and decided to give it a go.

“I’m in disbelief I have won, actually speechless! I’ve only been playing for three or four months, so it’s very unexpected but hugely welcomed.

I found out about the Contact Lottery on Facebook as I’m a parent to two girls with ADHD and my eldest also has autism, so I thought I’d give it a go and give something back whilst trying my luck.

I can’t believe it actually worked and I won something! I’m really looking forward to a brilliant Christmas now and I would encourage everyone to sign up.”

Contact lottery winner Samantha wearing glasses and smiling with her two children
Samantha and her family.

How to join our lottery

Join Contact’s Weekly Lottery for as little as £1 a week and get a chance to win up to £10,000.

Not only that, you’ll also be helping fund our support services for families with disabled children. It’s a win-win!

Congratulations once again to Samantha, and good luck to all our wonderful players in the next draw.


On Wednesday, Chancellor Jeremy Hunt set out the government’s plans for the economy in his Autumn Statement. Read our CEO’s response.

Below we outline some of the main benefit changes relevant to families with disabled children.

Benefit changes at a glance

The Chancellor announced:

Response to consultation on proposed changes to the work capability assessment

The work capability assessment is a disability assessment the government uses to decide how much benefit disabled adults on certain benefits like Universal Credit and Employment and Support Allowance should receive. It also determines whether they should be look for work while claiming that benefit.

There are three possible outcomes of a work capability assessment:

The government intends to scrap the work capability assessment and replace it with the Personal Independence Payment assessment. However, that change is not expected to take place until 2026/27 at the earliest.

In the meantime, the government intends making changes to the work capability assessment. This will see a reduction in the number of new claimants having a LCWRA. In responding to a consultation, the government has confirmed that it plans to make these changes from April 2025, for new claims only.

If you have a limited capability for work, you don’t have to look for work, but you must still take part in work-related activities to get you more ready for work. For example, you may have to take part in training. Having a limited capability for work does not lead to any additional benefit payments.

However, if you have LCWRA, you won’t need to meet any work-related conditions like job seeking or training. You’re also eligible for an extra amount of benefit. 

Changes the government is proposing

Substantial risk to health

The government plans to amend the rules that allow a disabled person to be treated as having a LCWRA where taking part in work-related activity would place them or others at ‘substantial risk’. These rules will become more restrictive.

Although yet to announce full details about how it will apply the new rules, the government says that it will protect those with physical health problems. This means that where being taking part in work-related activities would lead to a deterioration in your physical health, the government will protect you as someone at substantial risk. 

Mobilising

It also plans to remove difficulties with mobilising from the list of activities used when deciding whether someone has a LCWRA. Currently those who cannot mobilise for more than 50m without pain or discomfort are one of the groups having a LCWRA.

The government claims that those with the most significant mobilising needs will not lose out as a result of this change. Instead, the substantial risk rules will treat them as having a LCWRA.

Difficulties in physically mobilising will still factor in deciding whether someone has a limited capability for work.

Getting around

In assessing whether someone has a limited capability for work, there will be a reduction in points awarded for difficulties in getting around without the help of another person, for example due to mental health problems. 

Other changes consulted on

The government has decided that it will not proceed with proposed changes in how the work capability assessment deals with problems with incontinence or in engaging in social engagement.

Need advice?

We have lots of information and advice about benefits and tax credits and money and debt.


Yesterday, Chancellor Jeremy Hunt set out the government’s plans for the economy in his Autumn Statement.

Measures announced include:

Read the Chancellor’s Autumn Statement in full.

Our CEO responds to the Autumn Statement

Anna Bird, Chief Executive of disability charity Contact, said: “Now into a second year of sky-high costs for food, heating, rent and mortgages, families with disabled children say they face a constant battle to keep afloat. Disappointingly there was little in yesterday’s Autumn statement to alleviate the hardship many are experiencing.

“There was no targeted support and no commitment to a social tariff to help with families’ higher energy costs. Families with disabled children pay £1,600 a year more than other households for their energy, to run vital equipment like ventilators, adjustable beds, hoists and suction pumps. They now face a difficult winter without the support they desperately need.

“The Chancellor chose to focus on tax cuts rather than investing in public services that disabled children and their families depend on. Families are exhausted from filling gaps in support for physiotherapy, speech and language, as well as mental health services. Over the last 10 years support services have been cut back and families are left to do more, often complex care. This has devastating impacts on their wellbeing and their ability to be in paid employment.

“On top of this the lack of action on fixing the Carer’s Allowance earnings limit, is another blow to those families who would like to combine caring with paid employment.”

We will spell out what the Autumn Statement 2023 means for families with disabled children in more detail soon.

Need help with your finances?

We have lots of information and advice about benefits and tax credits and money and debt.

Families have warned that latest draft guidance from the National Institute for Health and Care Excellence (NICE) will shorten their children’s lives. 

NICE, the body that reviews and evaluates treatments, has concluded that some effective therapies available on the NHS should no longer be prescribed to new patients on cost grounds. 

Cystic fribrosis (CF) is a progressive genetic condition that leads to problems with breathing and digestion over time. Around one in 2,500 babies are born with the condition.  

NICE has spent a year evaluating a relatively new class of “modulator therapies” that can improve lung function, growth and weight gain in people with CF. 

Patients with CF told the NICE evaluation team that the new treatments had transformed the disease from a progressive and life-limiting condition into a manageable chronic condition. 

But the therapies are expensive, and NICE is now recommending that no new patients are offered the drugs. Patients already on the drugs will continue to receive them. 

“We are being forced into a situation where we are going to have to watch our daughter deteriorate year on year until she dies at a very young age. I just can’t do that,” Charlotte Perkins, mother of a 17-month baby told the BBC last week. 

Share your views in the NICE consultation

People have until 24 November to respond to a consultation on the guidance.

You can read the draft guidance and submit a response on the NICE website. Respondents will need to create a free account with NICE to submit a response. 

Will the proposals affect your child?

Do you want to share your experience and concerns? Please email Amanda.Elliot@Contact.org.uk 


Today, MPs debate the Kings Speech, which sets out the government’s plan for the year ahead. Opposition MPs are using the debate to highlight data that shows over two million children could be regularly missing school by 2025 if the number of pupils absent from classrooms continues at the current rate – one in four of all children currently at primary and secondary school.

Contact welcomes the focus on persistent absence and calls for greater understanding of children with special educational needs and disabilities (SEND) and why they feature so prevalently in persistent absence figures.

Unmet need

Una Summerson, Contact’s Head of Policy, said: “Absence rates for pupils with SEND are significantly higher than their peers. And they are rising, especially across special schools. This is often down to unmet need.

“Just under 40% of calls to Contact’s helpline come from parents who say the school or local authority is not providing the right support for their child. We also hear from parents that the school environment and culture is sometimes detrimental to their child’s needs.

“A focus on mental health is important, but we also need to look at other reasons that children with SEN may be absent. This includes medical reasons, a lack of support in school, delays in assessment for support, lack of suitable school places and disproportionate use of exclusion on children with SEND.”

There is also a disproportionate number of pupils with SEND who are home educated, with reported pressures to do so. Contact has long called for a compulsory register of children who are home educated.

Earlier this year Contact submitted evidence to a parliamentary inquiry on persistent absence. The committee’s report stated: “growing demand for mental health services and special educational needs support, as well as cost-of-living pressures, have compounded a problem that worsened following the Covid lockdowns but remains present”.

Advice for families whose children are absent from school

We have information for parents about absence from school for medical reasons, how to support children back to school after a period of absence and the use of fines for parents whose children are persistently absent.

We’re launching an exciting new project helping families with Disability Living Allowance applications, and we’re looking for volunteers to take part.

DLA is the main benefit for families with a disabled child. Over 1/3 of these families spend £300+ monthly on costs related to their child’s disability and care, so this additional financial support is vital. But many families miss out on claiming DLA, as they don’t know have access to help to complete the long and detailed form.

As a DLA Supporter volunteer, you’ll provide this much-needed help and make a massive difference to families’ lives.

About the role

We are looking for volunteers to help families complete the DLA form via Zoom. You can volunteer from the comfort of your own home, or you are welcome to go into our office in London.

Find out more and apply

You can find out more about the role on our expression of interest page, where you’ll also be able to complete an application form.

If you have any other questions about the role, please get in touch! Email us at benefitingyou@contact.org.uk

A review of the law on disabled children’s social care in England has been commenced by the Law Commission on request of the Department for Education, a move that Contact and the Disabled Children’s Partnership have been campaigning for over the last five years.

What’s the aim of the review?

Currently, a patchwork of legislation governs disabled children’s social care law, some of which dates back more than five decades. This has contributed to a variation in the amount and quality of support local authorities provide. It’s also unnecessarily complicated the routes to accessing support for parents with disabled children.

The overarching aim of the review will be to simplify and strengthen the law, ensuring that the system is fair and works for children, parents and local authorities.

Jesslyn Parkes, senior parent adviser at Contact, says:

“Social care is consistently the third most common inquiry to our helpline. Families struggle to understand what support they’re eligible for.  For example, we hear from parents whose child the local authority refused a needs assessment or who faced delays getting support. Too often support only arrives when families hit crisis point. Parents also tell us they felt humiliated and blamed when they sought help from social care services.

“That why we welcome the review by the Law Commission into the legal framework for disabled children’s social care. This is long overdue and creates an opportunity to improve the system for families with disabled children.”

How can I get involved?

The Law Commission has started preliminary work, with the aim of publishing a consultation in Spring 2024. To inform this process, in the coming months the Commission is engaging with a range of individuals and charities, like Contact, with experience of social care for disabled children

In particular the Commission hopes to engage with parent carers through a combination of online discussion sessions and surveys to better understand the current barriers to accessing social care.

What is the Law Commission?

The Law Commission is a statutory, independent body.

Find out more about the Commission. Or read more about the review, including the terms of reference.

Halloween and Bonfire Night are just around the corner – and we know what a difficult time these annual events can be for some children with additional needs, especially those with autism and sensory processing issues.

We’ve gathered together some great tips to help make these events less overwhelming for your child.

Young pupil using phone at the desk in school

The Education Secretary, Gillian Keegan, has announced that schools across England should ban mobile phone use to improve behaviour.

New guidance for schools will support teachers in banning mobiles throughout the school day, including at break times.

But we urge schools to remember that mobiles phones must be allowed where they provide a “reasonable adjustment” under the Equality Act 2010.

The aim of the ban

The government says that the ban will “tackle disruptive behaviour and online bullying while boosting attention during lessons”.

The ban builds on a £10 million investment in behaviour hubs, which support up to 700 schools to improve behaviour. 

Contact’s view on the ban

While policies of limited phone use are already in place in most schools, the shift to a complete ban on phones in schools raises some concerns if not implemented carefully.

We recognise that the use of phones by pupils in school is often disruptive to education and learning and can exacerbate bullying. But schools must remember their duty to make reasonable adjustments to avoid discrimination.For disabled pupils or those with special educational needs (SEN) or a medical condition, this might be access to their mobile phone. This must be allowed.

Why is access to phones so important for disabled children and those with SEN?

There are various reasons why these children might need access to their phone. These include:

We are aware that this is a highly divisive subject. If you have views on the ban of phones in schools in England, you can join the debate on our Facebook page.

Share you

Matthew and family

As we approach our Rare Conditions conference on 4 October we share the perspective of Nigel Nicholls, a father caring for a child with a rare condition.

Nigel will be talking at our October conference. Parent carers of children with a rare condition are invited to join us

“Fatherhood is one of those momentous points in your life when you are awed by the miracle of birth. You know it will be life-changing – but I didn’t know how life changing it would be until Matthew came along. So, let’s talk about Matthew.

“Sophia, my wife had been carrying Matthew uneventfully for nine months and finally the day came at Eastbourne General Hospital when Matthew was born. Our natural reaction when we meet someone new is to look into their eyes but as soon as I looked into Matthew’s, I knew something was wrong. Both were closed and the one on his left side was sunken into his skull as if there was nothing there.  It’s hard to relate, but you can imagine how excitement in one moment turns to uncertainty and fear for the future in the next. I can still remember sitting in the hospital room in those early hours recognizing that dreams and reality had collided.”

Contact was able to support us right at the start of our journey

“Matthew was diagnosed with a condition we had never heard about, Peter’s anomaly. We were told nobody really knew much about the condition or its prognosis.  The one thing we did know was that he would be blind with potential significant neurocognitive impairments.

“As Sophia and I left the hospital we looked on the doctor’s notice board and saw a poster about Contact. This turned out to be a life saver as they were able to support us, and sign-post us to other groups right at the start of our journey. I have so much respect for what they do that I served for some time as a trustee and I’m still currently a Patron of Contact.”

Matthew inspired me to change my life!

“Matthew’s birth in 1996 was the catalyst for me to look at my own life and I vowed to work for companies who would give hope to people living with rare diseases. Within 6 months I was employed at Orphan Europe, a company that specialises in bringing drugs to market for rare diseases.

“I now serve as the global patient advocacy lead for Egetis, a Swedish based biotech company focused on creating a better future for those living with rare conditions including MCT8 deficiency  – an ultra-rare,  genetic condition which leads to multiple symptoms such as neurocognitive impairment, muscle wasting, lack of weight gain and elevated heart rate and blood pressure problems. The condition has a profound impact on both people living with the condition and their carers  from birth. Find out more about World MCT8-AHDS Awareness Day on 8 October.

“Matthew is now 27 years old and living with carers in a residential setting. He still continues to love music, trips out and being with family. I hope the pictures show a young man living and loving life in spite of the many challenges behind and in front of him.

“I am acutely aware that I would not have this role and platform without Matthew and always pay tribute to him for inspiring me to be better. If it helps someone else be motivated to make a difference, I’ll continue to keep talking about Matthew!”

Find out more about our support for families living with a rare condition.

Take a look at our tips for fathers caring for a child with additional needs or download a pdf of our fathers guide.

Doctor giving child a vaccination

The roll-out of flu and Covid vaccinations in England has been brought forward to Monday 11 September following the identification of a new Covid variant.

Who is eligible for a Covid booster?

The government announced earlier this summer that the following groups are eligible for an autumn Covid booster:

Family carers can get an autumn booster if they are eligible for Carer’s Allowance or if they are 16+ and the sole or primary carer of an elderly or disabled person at increased risk of dying if they get Covid (and therefore are clinically vulnerable).

See which children under 16 count as clinically vulnerable.

The government will begin to invite eligible groups to book an appointment via the national booking service.

Who is eligible for a flu vaccine?

The following children are eligible for a free flu vaccine this year:

Anyone who receives a Carer’s Allowance, or who’s the main carer for an older or disabled person, is also eligible. Your doctor will let you know when you can book a vaccine, so make sure you’re registered with them as a carer.

Children aged two and three years will receive the vaccination at their general practice, usually by the practice nurse.

School-aged children will be offered a flu vaccine in school, or they can be vaccinated at community clinics.

Most children will get the vaccine as a nasal spray, aside from those under two years old and those for whom the nasal spray is unsuitable.

Find out more

We have more information about the flu and Covid vaccines on our website.


Sad girl being comforted by mum


New data released by the Department for Education (DfE) shows that pupils with special educational needs (SEN) in England continue to be more likely to be permanently excluded or suspended from school than non-disabled children.

During the school year 2021/22, exclusion rates for children with no SEN were 0.05. For those with an education, health and care (EHC) plan they were 0.13. And for those with SEN but no EHC plan, they were 0.25. This was the first full school year since the pandemic.

Una Summerson, Head of Campaigns at Contact, said:

“Exclusion is a top concern for many of our families. Schools could be acting unlawfully if excluding pupils because of behaviour resulting from their SEN. They must also consider other support and measures first, using suspension and exclusion as a last resort. And sadly these figures will be the tip of the iceberg. We know that many disabled children are also regularly excluded by unofficial means: put on part-time timetables or kept away from certain activities, for example.

“It is vital that children with SEN get the right support, in a suitable setting, to reduce this disparity in exclusion and suspension rates. Being excluded from school has a devastating impact on a child’s education and mental health, as well as that of the whole family.”

Need advice on exclusions?

We have updated our online information about exclusions to ensure parents know their rights and how to challenge decisions.

Exclusions

Exclusion is the formal sending home of a pupil from school for disciplinary reasons. An exclusion can be permanent or fixed-term (temporary, and sometimes referred to in government guidance as “suspension”.) A pupil is not allowed in school while they are excluded.

Find out more

The government is currently consulting on changes to its social care statutory guidance called Working Together to Safeguard Children in England.

We want to make sure families with disabled children can share their views and experiences on these proposed changes, so we asked the Department for Education to set up a consultation event.

Have your say on 17 August

To book a place on the online event taking place on Thursday 17 August (11am-12pm), visit the Eventbrite page.

If you can’t attend but still want to contribute your views on supporting and safeguarding disabled children to our consultation response, please email our health lead Amanda on amanda.elliot@contact.org.uk

The government has also announced which local pathfinder areas will be testing new ways to delivering children’s social care. This is part of its response to recommendations from the Independent review of children’s social care.

What is Working Together?

Working Together is guidance that organisations in England must follow to promote and protect the wellbeing of children. It covers both the regular support disabled children get from social care services, as well as safeguarding and child protection processes.

What are the issues?

Social care is consistently the third most common inquiry to our helpline. Often we hear from parents whose child was refused a needs assessment or was assessed and then faced delays getting support.

Research has found parents with disabled children often feel humiliated and blamed when they sought help from social care services. More rarely, disabled children may be subjected to care orders when the crisis could have been averted with much earlier social care support for the family.

Alongside disabled children’s social care experts, we are concerned that proposed changes do not address these challenges families are facing with the assessment process.

In his blog, Luke Clements, Cerebra Professor of Law at Leeds University, describes issues with the draft guidance

Share your views

If you want to contribute you views on supporting and safeguarding disabled children to our consultation response, please email our health lead Amanda on amanda.elliot@contact.org.uk.

You can also share your views directly on the government website (you don’t need to answer every question) before 6 September 2023.

Visit our social care webpages to find get advice on how to go about getting social care support for your disabled child.