Category: Other

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.

People with a learning disability from ethnic minorities have a shorter life expectancy than their white counterparts, according to a new NHS report. 

We Deserve Better, a review of research by the NHS Race and Health Observatory, found a lack of reasonable adjustments and failure to recognise needs were common obstacles to people receiving good health care. 

Other obstacles included language barriers, cultural insensitivity, and a lack of information in easy read. 

Authors found no information or policy direction on learning disabilities and ethnic minorities in relevant legislation including the Children and Families Act 2014 and recent Down Syndrome Act 2022.

Among its recommendations, the report calls for interventions for carers of people with a learning disability from ethnic minority backgrounds that address their needs, including their wellbeing. 

Dr Habib Naqvi, chief executive of the NHS Race and Observatory, said the disparities were “unjustifiable and avoidable”

Tom Cahill, National Learning Disability and Autism director, NHS England, said the NHS was already acting on issues highlighted in the report including requiring GPs to record the ethnicity of people with a learning disability as part of the learning disability annual health check available from age 14.

A damning parliamentary report has called on the government to take urgent action to end the ‘crisis in access’ in NHS dentistry.

Children, especially those with complex needs,  SEND  and autism are among the people hardest hit by the lack of NHS dentists, according to the report from the Health and Social Care Committee.

Around 27,000 children on specialist dental waiting lists

Recent NHS figures showed that in January around 27,000 children were on waiting lists for specialist dental care, assessments or procedures.

The report paints a depressing picture of ‘dental deserts’ in England with no NHS dentistry. More than 3,000 dentists have left NHS since the covid pandemic.  1 in 5 people are not registered with an NHS dentist and 1 in 10 have resorted to doing their own dental work.

The government not yet published its promised recovery plan for NHS dentistry. 

New NHS Integrated Care Boards (ICBs) in England are now responsible for commissioning NHS dental care, including community dental services for children who cannot use high street dentists.

Last year Contact worked with NHS England to shape new framework for dental services for autistic and learning-disabled children in residential schools, promised in the NHS Long Term plan.

Contact continues to press better dental services for all disabled children.

Our dental care resources

Take a look at our dental care webpage.

Read our parent guide to oral and dental health.

Browse in our Fledglings shop for a great collection of oral health products for disabled children.

The House of Commons Education Committee today published its report, Support for childcare and the early years (2022–23).

The report calls for mandatory training in Special Educational Needs and Disabilities (SEND) for all early years’ practitioners. It also recommends that sources of funding for additional SEND support must also be made easier and quicker for providers to access.

The cross-party MPs who form the Education Committee recommend the government:

Today’s report follows an inquiry by the Education Committee examining why childcare and early years’ education has become so expensive and the workforce issues facing the early years sector.

Giving evidence at the inquiry Contact’s Early Years lead, Mary Mulvey-Oates told MPs that having a well-trained early years workforce delivering early interventions can help create positive discussions with a child’s family about disability that focus on their strengths and opportunities.

She also drove home to the committee the difficulties parents experience finding a suitable nursery place and called for “greater simplicity and clarity” for parents and providers to access SEN inclusion funding.

Have your say on the government’s proposals for early years funding for under 2s

The government are looking for your thoughts on its proposals regarding their approach to funding early years entitlements for children aged 2 and under from April 2024 and how local authorities distribute the funding to their providers.

Last March the government announced that working parents of children aged between 9 months and three years in England will be eligible for 30 hours of free childcare a week, for 38 weeks a year. This will be rolled out in phases with the plan that from April 2024, working parents of two-year-olds will be eligible for 15 hours of free childcare. From September 2024, this will extend to working parents of children aged between nine months and two years.

Tell the government your views

Contact’s early years advice

Take a look at our early years advice and information including childcare and support in early years education.


A new report from the Public Accounts Committee (PAC) – a group of cross-party MPs – has found that nearly a million young people are missing out on savings in their Child Trust Funds

The committee, which scrutinises the value for money of government projects, estimates that more than £1.7billion is sitting in accounts waiting to be accessed. At least 80,000 of those accounts are owned by young people with a learning disability who lack mental capacity.

Their report backs up what Contact and campaigners have been saying about the Court of Protection process needed when a disabled youngster lacks mental capacity to access savings – it’s difficult, time consuming, and costly.

Parents speak out

Our Change Maker, Ramadeep and her son Harry told the BBC what the money would mean to them and how the Court process is locking the money away:

“The money will mean so much to Harry – but at the same time the bureaucracy, cost, and overall impact of the legal implications is huge. I saved for my son, like I did for his brother – the whole system is wrong if it deprives Harry of what is rightfully his.”

Contact has joined parent campaigners, legal and financial firms campaigning to unlock £210 million of savings in Child Trust Funds for 80,000 disabled youngsters.  To date nearly 2000 of our supporters have written to their MP calling for a simplified process to help release savings.

Andrew Turner, the parent leading the campaign told the Times Newspaper:

“All we’re asking is for the government to come up with a simple process. None of us want fraudulent activity to take place. But you don’t necessarily need such a heavy duty process.”

As of this week more than £58 million of savings in Child Trust Funds has been locked away from disabled youngsters.

Martin Lewis speaks out

Martin Lewis, the financial expert, has recently raised his concerns about the issue. He agrees that the Government has so far ‘failed to meaningfully act’ to help young people locked out of their savings. He wrote to Children’s Minister calling for action, you can read her response in his blog: https://www.moneysavingexpert.com/news/2023/07/martin-lewis-minister-responds-child-trust-funds/

What do MPs say should be done?

The Public Accounts Committee report makes a number of recommendations, including calling on the government to set out what action they are taking to help the families of young people who lack mental capacity to access their Child Trust Funds without excessive bureaucracy and cost.

It also says government should do more to find and contact young people who have not claimed their Child Trust Fund.

The government will now have to respond to the report. You can find the summary and full report here.

What Contact and other campaigners want

We are calling on the government to increase the scope of the DWP Appointee Scheme to cover Child Trust Funds and Junior ISAs up to £5,000.

This would bring England and Wales in line with Scotland, where an Access to Funds scheme makes it easier and cheaper for young people who lack mental capacity to access their savings.

Our advice to families

On Friday 14 July, the Contact Weekly Lottery had two more £1,000 winners – Stacey from Kettering and Cheryl from North Shields and they are both parent carers!

Stacey and Cheryl matched five numbers and won big – just in time for the school holidays.

My son has disabilities which are hard to manage in many social settings, and there are no SEND holiday clubs near me, so this money will pay for activities that we otherwise wouldn’t have been able to do.

Cheryl from North Shields

We spoke to Cheryl to tell her the good news who said: “Thank you so very much for this amazing news! Hard to believe I have won £1000…never have I won anything like this! Amazing considering I’ve only been playing for just over one year!! Fantastic windfall, especially with the school holidays approaching! This money will make some happy summer memories for my two children. My son has disabilities which are hard to manage in many social settings. There are no SEND holiday clubs near me, so this money will pay for activities that we otherwise wouldn’t have been able to do. Contact lottery is so worthwhile, knowing I am also contributing to such a cause close to us all in our community. Genuinely over the moon.”

And when we told Stacey she was the winner of £1,000 she said:

The school SENCO recommended looking to Contact for advice and information, and I did. I came across the Contact Lottery thinking I have nothing to lose but families have something to gain. I did it – and here I am a winner of £1,000 just before summer holidays! It’s absolutely amazing!

I hope more families join because it’s great giving something back and be in with a chance of winning.

Stacey from Kettering

Last chance to get a free entry into our upcoming draw!

If you haven’t played our lottery yet, you’re in luck because we’re celebrating its third birthday in July by giving all new players one free entry!

It’s your chance to be the next player to win the jackpot while funding our vital services to help other families like yours.

Simply sign up by the 31 July, and we’ll add a free entry to your first draw once your initial direct debit payment has been processed.

Four parent carers win big in less than a month

The Contact Weekly Lottery has over 200 winners every month and we’ve just had four parent carers take home £1,000 each in less than a month. If you join us, you could be next!

Play Contact’s Weekly Lottery for as little as £1 a week and have a chance to win up to £10,000, all while helping us make a difference to thousands of families with disabled children in the UK.

Congratulations to Stacey and Cheryl and good luck to all our wonderful players in the next draw!

Promotion T&Cs: From 5 -31 July 2023, new supporters who sign up for the Contact Weekly Lottery will receive one complimentary entry. To be eligible, you must sign up for the lottery and be included in the draw. Your first draw will take place once your direct debit has been set up and the first payment has been made. Each supporter is entitled to a maximum of one free entry. Please note that no lottery numbers will be provided for the complimentary entry.

Today, our Change Makers Jasmin and Lauran speak out in the Metro newspaper about the lack of holiday clubs for disabled children this summer.

‘Holiday clubs are generally markerted towards children more broadly as opposed to disabled children. It’s generally assumed that all children are the same, and the staff-to-child ratio reflects that.

‘School holidays are really overwhelming and it makes me sad and angry because my daughter is entitled to play. She is entitled to be herself, she is still a child. She’s just a child that has different needs.

Change Maker Lauren shares concerns in Metro Newspaper

Read the full article here: Parents of disabled children can’t find summer childcare | Metro News

The Metro follows on from the launch of our report, Loneliest Summer on BBC News last Friday which showed 9 in 10 families haven’t been able to find any suitable childcare this summer for their disabled children.

Take action on the lack for holiday clubs

In response the Disabled Children’s Partnership have launched a campaign action calling on supporters to write to their councillors calling for more holiday provision for disabled children in their local area. 

An email template has been set up to make taking action quick and easy

Related information

Family life, work and childcare

Advice on returning to work, finding and paying for childcare, plus what to do if you are refused childcare. The webpages also include tips on looking after you and your family’s wellbeing.

Holidays, play and leisure

On this page we have information about what play, leisure, and short breaks options may be available, and where to find more information.

Short Breaks (respite)

Local authorities/trusts have duties to provide short break services and make clear how families can access them.

Many disabled children need structure and routine to maintain sensory regulation which helps reduce anxiety and challenging behaviour.  When structure is absent, for example in the summer holidays, disabled children’s needs may increase not just in the home but also upon their return to school. 

Parent carers based in London and the Midlands are invited to join one of our two free online workshops providing you with tips and tools for supporting children with autism during the summer holidays.

The workshops take place between 7-8pm on Tuesday 18 July and 10:30-11:30am on Wednesday 19 July.

Book your free place today. You don’t need a diagnosis for your child in order to attend.

About these workshops

Commissioned by NHS England’s Workforce, Training and Education Team, these workshops are part of the Autism Central Peer Education Programme. This new programme aims to offer families and carers of autistic people high-quality and accessible autism information, education and coaching and is co-delivered by autistic people, families and carers. Contact and Ambitious about Autism are the London and Midlands Regional Hub partners for the programme.

At Contact, we wouldn’t be able to do what we do without the insight and support of parent carers just like you. We are now looking for two new people to join our board of trustees and play a crucial role in steering our fantastic charity.

With our new CEO, Anna Bird, at the helm, this is a brilliant time to join our Board and make a real impact. 

We’re particularly looking for:

Watch our vice chair of trustees, Angela, talk about why she volunteers for us:

Interested in applying?

If you are a parent carer and think you could have the skills and qualities we’re looking for, we’d love for you to apply!

Find out more about the role and apply to be our trustee based in Northern Ireland.

Or find out more and apply for the fundraising trustee role.

The deadline for applications is 9am on Friday 21 July.

See all our current vacancies.

Missed our recent Facebook Live on Child Trust Funds, Junior ISAs and mental capacity?

Not to worry – you can still view the recording on Facebook or watch it on YouTube, or below.

You can also read a full transcript of the session, which includes some quick links to all the questions that were answered.

Our Child Trust Funds and Mental Capacity Live Q&A

Around 100 parent carers joined us live on Monday to hear our expert panel interview with Myra from Foresters Financial and Phillip from Renaissance Legal. 

Contact’s Policy & Campaigns Director Una Summerson quizzed Myra and Phillip for an hour on an issue arising for thousands of families, whereby young people turning 18 who lack mental capacity are becoming locked out of their savings accounts.

Topics covered in the Q&A 

During the interview, Phillip and Myra shared expert insights on: 

A challenging process to navigate 

Phillip from Renaissance Legal told us that they have been campaigning since 2016 to make the process of accessing Child Trust Funds more straightforward for families. 

“We are trying to encourage the government to change the law. We want a simpler process for families to access Child Trust Funds where the child doesn’t have mental capacity, without going through the Court of Protection”. 

Myra from Foresters told Una that she had “enormous sympathies” for families finding themselves in the situation of having a young person unable to access their own savings and having to face applying to the Court of Protection. She said that Foresters were working with families on a case-by-case basis. While families may still have to apply to the Court of Protection, Foresters would look at each case individually. 

During the session, parents shared comments about their knowledge and experiences of trying to access their child’s trust fund account. Parents were frustrated that being a benefits appointee is not sufficient for accessing Child Trust Fund accounts. And they shared concerns about the ongoing complexity of the Court of Protection process. 

All the participants encouraged families to speak with their Child Trust Fund provider in the first instance if this affects you.

Take action on our Child Trust Fund campaigns

We are supporting parent Andrew Turner in his parent-led Child Trust Fund campaign, asking the Government to make urgent changes. 

Take action to unlocking savings for disabled children by emailing your MP.

Parent and carers of autistic children who are based in London or in the Midlands are invited to join our free workshop about Autism and Employment next week. You don’t need a diagnosis for your child in order to attend.

This workshop has been developed to help parent carers understand some of the challenges autistic people face when looking for employment opportunities.

You’ll hear more about social communication barriers, stigmas, and misconceptions. And you’ll also discover some tips and strategies to help you support your autistic child and young person on their journey to meaningful employment.

If you live in London

Our free workshop for London families takes place on Tuesday 27 June, between 2-3pm. This workshop has now taken place.

If you live in the Midlands

For families based in the Midlands you’re invited to join us on Thursday 29 June between 2-3pm. Book your free place.

About these workshops

Commissioned by NHS England’s Workforce, Training and Education Team, these workshops are part of the Autism Central Peer Education Programme. This new programme aims to offer families and carers of autistic people high-quality and accessible autism information, education and coaching and is co-delivered by autistic people, families and carers.

Contact and Ambitious about Autism are the London and Midlands Regional Hub partners for the programme.