We have been overwhelmed by everyone’s support to help disabled children access their own savings before it’s too late.
A huge thank you to over 1200 supporters who have taken action on the Child Trust Fund campaign writing to their MP to raise awareness and call for change.
Tens of thousands of disabled teenagers have a Child Trust Fund savings account, with the average account value estimated to be around £2,000. However, families of young people who are unable to manage their money as they lack mental capacity have to apply through the Court of Protection to access their savings. This is a lengthy, costly and complex undertaking.
We have been receiving your MP responses and will reply to those in the coming weeks. We will highlight our concerns about the government’s proposals to address the issue.
Government proposals won’t work for majority
Una Summerson, Head of Campaigns at Contact, said: “The government says it plans to digitise and streamline the Court of Protection process. But we are concerned this does not go far enough and that no timescales have been given. In addition most of the families we support do not want deputyship, which comes with added responsibility, cost and administration. That’s why we are calling on the government to give families an alternative way of accessing their savings.”
Parent campaigner Andrew Turner added: “There is already a tried and tested way for families to manage their child’s money – the DWP appointee scheme. Many parents are entrusted by this scheme to manage benefits in excess of the savings held in the Child Trust Fund account. That’s why it makes perfect sense to expand the scope of the scheme to cover Child Trust Funds and Junior ISAs.”
Savings lost each week
Andrew has today launched a lost benefit calculator to illustrate the amount of savings being lost each week as more and more Child Trust Fund accounts of young people with learning disabilities are locked. We hope it will act as an incentive to the government to act now before it’s too late.
John Roberts, dad to Joseph aged 18, is still waiting for a response from his MP.
“Like many parents of children with learning disabilities who have turned 18, we are stuck with what to do with the Child Trust Fund we created when our son was born as part of the CTF initiative set up by Gordon Brown.
“Joseph is unable to manage his own financial affairs and is therefore unable to gain access to the money in his CTF, which is held at HSBC. I understand that the only way to gain access to those funds is for either my wife or I to obtain financial deputyship on his behalf. This currently has an application cost of £371, plus £494 if the court decides the case needs a hearing. There is also an annual general supervision fee of £320 (reduced to £35 for minimal supervision), plus a £100 assessment fee for a new deputy. The process is complicated and we have been advised that it is better to apply with a lawyer, for which the lowest fee we have been quoted is £1600.
“For most people in our situation the complexity of this process is appalling and the cost totally prohibitive as it is likely most CTF’s will not contain sufficient funds to cover the above costs.
“My parents have been paying money into their grandchildren’s CTFs every year as a birthday present. Our daughter will be able to access those funds to pay for whatever she chooses when she turns 18 in three years time. Unfortunately, Joseph can’t, and currently no-one can access the funds unless we apply for deputyship. Joseph has no other assets and is unlikely to have any, other than his disability allowances (DLA/Mobility/PIP) during his life, so financial deputyship, and the on-going costs associated with it, will only ever be needed for this one transaction.
“Surely we can find a solution to ensure that we do not penalise our most vulnerable young people.”
19 June is DinoDay, our annual fundraising event to raise vital funds so we can be there for even more UK families with disabled children.
This year, we’d love as many of you as possible to be part of #TeamDinoDay, and it couldn’t be easier.
Simply:
Choose a family-friendly activity to take on this June. It could be visiting the park 19 times. It could be drawing 19 dinosaurs, walking 19 miles over the month, or doing 19 star jumps. Big or small, the activity you choose is totally up to you – as long as the number 19 is involved!
When you complete our registration form, you’ll get a free child’s DinoDay t-shirt and printed activity tracker to make sure your challenge is a roaring success!
When you register, you’ll also be invited to join our DinoDay Stomp and Roar Facebook Group.
There, you can meet other families taking part and find helpful tips and ideas of things to do. And you’ll also find some dinosaur-related activities to do!
Could you ask your child’s primary school to get involved in DinoDay?
By taking on the DinoDay Challenge and raising funds for Contact, you’ll be helping us continue to transform the lives of families with disabled children with our vital services and information.
With Contact’s help, successfully challenged the government through the courts to make things fairer for families with disabled children.
The money you raise this June will also help us campaign to tackle the inequalities that families with disabled children face, like we did for Mathieson’s family and the thousands of others.
We are delighted to open our new e-publications library containing our five most popular guides for parent carers. We’ll be adding to our e-publication list over the coming months.
One downloaded, you can read our e-pubs even when you are offline.
If you use an e-reader device, such as a Kindle or Kobo, we recommended searching the internet for instructions on “adding an epub file to [device name].” It should be quite straightforward. For example, if you have a Kindle, you can an e-publication to your device via the Kindle smartphone app, by email, via an Amazon account or via USB.
The national roll-out of managed migration – the process of replacing legacy benefits with Universal Credit for existing claimants – will extend to the Greater Manchester, East Yorkshire and Humber areas from June 2023, before expanding to the rest of the country.
Roll-out initially to “tax credits-only” claimants
The Department for Work and Pensions (DWP) confirmed at a recent stakeholder meeting that the latest roll-out will apply only to people in these areas who are “tax credits-only” claimants. This means people who are getting tax credits, but who do not receive any other legacy benefits.
The DWP had already announced that tax credits-only claimants in Avon, Somerset and Gloucester would have to migrate to Universal Credit from April. Tax credits-only claimants in East London and Cheshire followed suit in May.
Britain-wide roll-out to within the year
Following the latest roll-out in June, the DWP intends to eventually roll out managed migration to tax credits-only claimants in all other parts of Great Britain (England, Wales and Scotland) this year. There is no precise timetable for this, thought the DWP plans to migrate tax credits-only claimants onto Universal Credit:
In every DWP region by September 2023.
In every jobcentre in Great Britain by the end of March 2024.
And in 2024/25, managed migration will roll out nationally to claimants on:
Income Support, income-based Job Seeker’s Allowance and Housing Benefit, including where paid alongside tax credits.
Tax credits alongside income-related Employment and Support Allowance.
People who receive only income-related Employment and Support Allowance, and no other legacy benefits, won’t be migrated onto Universal Credit until 2028.
It is important to note that despite the name, managed migration does not mean you will be moved onto Universal Credit automatically. Instead, you will have to make a claim.
Other pilot areas
The newly-announced national roll-out to tax credits-only claimants — and, eventually, claimants of other legacy benefits — runs alongside the introduction of managed migration in a small number of pilot areas that started in May 2022.
In these pilot areas, claimants of all legacy benefits are moving onto Universal Credit. The government has not announced plans to add more pilot areas to the existing areas, which are:
We corrected this article on Friday 5 May 2023. The roll-out of managed migration to the areas of Avon, Somerset and Gloucester, East London and Cheshire is to tax credits-only claimants and not to claimants of all legacy benefits, as we published initially.
Today, Friday 28 April, is Undiagnosed Children’s Day, an important campaign to raise awareness of undiagnosed genetic conditions.
Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed. Children living without a diagnosis often have lots of medical appointments, and their parents can worry that they won’t get the support they’re entitled to.
That’s why it’s so important that everyone working with undiagnosed children understands the key issues and that families get the right help.
If your child is living without a diagnosis, you’re not alone! Other parents with disabled children can be a great source of companionship and support. And even if your children don’t share a condition, many parents find that the issues they face are the same.
One way of meeting other families is by joining a local support group, many of which are not based around a single condition.
You can also find parents across the UK in our private Facebook group, a safe space to talk to other families about a whole host of topics, from behaviour, eating and sleeping to education, health and social care.
This month, the National Living Wage (NLW) for over 23s increased from £9.50 to £10.42 an hour.
While this is good news for earners, yet again the government’s failure to raise the Carer’s Allowance earnings threshold will see carers forced to give up work or lose this vital benefit.
What is the earnings limit?
The earnings limit is a rule that prevents carers earning over £139 a week while claiming Carer’s Allowance.
If, after making these deductions, your earnings are even 1p over £139 a week, you will lose all of your Carer’s Allowance.
How does the NLW rise affect Carer’s Allowance claimants
We know that many carers want to work alongside their caring responsibilities. Many carers work part-time to balance both roles.
A carer earning the National Living Wage could, until April, work up to 13.5 hours a week while still receiving Carer’s Allowance. Their earnings would come to £128.25 a week – below the earnings limit, which was then £132.
But the same carer will now find their earnings are £140 a week, above the earnings limit of £139. Unless they can reduce their hours or make certain deductions, they will lose their Carer’s Allowance.
The government has continually raised the earnings limit only by a rate that falls below the corresponding rate in the rise in NLW. As a result, carers are losing their earning potential year on year.
The earnings limit must rise to £166.72
We want the government to rise the earnings limit to at least £166.72 a week – that’s 16 hours’ work on the NLW.
Thanks to National Lottery funding we are able to put on three ‘Better Together Through Sport’ activity days in West Yorkshire this summer.
We’ll use the funding of just under £10k to work in partnership with local Wakefield sport venue, Disability Sport Yorkshire, to run three events focusing on sport for children and young people with additional needs during the summer holidays.
We hope the weekly disability sport sessions will help reduce isolation and increase family confidence by enabling families to try out new sporting activities in a safe environment, make friends and share experiences with other families.
Last year, parent carers that attend our Better Together events told us that they feel less isolated (86%), more confident (75%) and more informed about how to get the support they need (70%). Three quarters of the children and young people who attended said they made new friends and all of them said they would like to try the activities on offer again!
Hannah Hassouni in Contact’s fundraising team says: “We’re really looking forward to working with Disability Sport Yorkshire this summer and encouraging children with additional needs in the region to get involved and try something new.
“Families we support tell us that leisure and play opportunities for their children – after school, in the holidays and at weekends – are extremely limited and barriers like accessibility and cost can get in the way. Children with additional needs who are not given sporting opportunities can miss out on the physical, mental and social benefits that taking part in sport brings and their emotional and physical wellbeing can be negatively impacted which can contribute to their social isolation and lack of confidence. And because Contact’s family workers will also be on hand at these weekly sessions, parent carers will be able to talk to us directly and get direct access to Contact’s trusted information, advice and support.”
New figures exclusively revealed by the BBC show that 80,683 disabled young people in England and Wales will miss out on Child Trust Fund savings worth £209,801,255.
Parent campaigner Andrew Turner, working with Contact, has calculated the total loss of money to disabled young people who lack mental capacity over the course of the Child Trust Fund scheme maturity. Over 20,000 accounts have already been locked with £48 million of savings in them. The average account has £2,280 in it and the losses will grow during the next six years.
While non-disabled youngsters are enjoying the benefits of their savings which they can access on their 18th birthday, many with a learning disability cannot.
Due to Mental Capacity rules, the families of young people with learning disabilities unable to manage their money, have to apply through the court of protection to access their Child Trust Funds. This is a lengthy, costly and complex process.
Parent campaigner, Andrew Turner, said: “The scale of this issue is truly shocking. Hundreds of millions of pounds of savings for disabled young people could be locked away for good. Many families will not have the capacity or funds to use the Court of Protection process and the savings of young disabled people will be locked away forever. The government must act to avoid thousands of locked accounts in the coming years.”
Appointee scheme could allow safe access to Child Trust Funds
Andrew Turner, together with Contact and Child Trust Fund providers are calling on the government to:
Increase the scope of the Department for Work and Pensions (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 it is easier and cheaper for young people with a learning disability to access their savings.
Publish a detailed plan with timescales of how they propose to simplify the court of protection process immediately.
Una Summerson, Head of Campaigns at disability charity Contact, said: “During this cost of living crisis it is more important than ever that disabled young people can access their own money. Preparing for adulthood is a challenging time. Forcing families to go through a complex court process at the same time is adding too much pressure.
“We are urging families with disabled teenagers to find out who their Child Trust Fund provider is, before their child turns 18. They can use the government website to find out. Then speak to the provider or bank about your situation. There are some providers such as One Family and Foresters who are helping young disabled people to access their Child Trust Fund savings without going through the court of protection process.”
Andrew Turner added: “Back in September 2020 my disabled son Mikey was locked out of his Child Trust Fund. He simply wanted to buy an adapted bike with his money and his life-limiting condition meant that time was of the essence. The Child Trust Fund was his only financial asset, which made it special. Nobody warned us we would need to go to court when the account matured. When we took advice we were told it would be easier and cheaper for us to wait until Mikey died when we could use a simpler process to reclaim the money. It was deeply upsetting. Three years later, this situation has not changed and more accounts are locked. That’s why the government must resolve this issue urgently.”
Find out more about Contact’s Change Makers – our programme that puts parent carers at the heart of our policy and campaigns work.
What to do if you have a Child Trust Fund
If your child is under 18 years old, you can find out if they have a Child Trust Fund using the government website here: Child Trust Fund: Find a Child Trust Fund – GOV.UK (www.gov.uk). Then speak to your Child Trust Fund provider about your situation. There are some providers such as One Family and Foresters Financial who are helping young disabled people to access their Child Trust Fund savings without going through the court of protection process (using the DWP appointee scheme as a safeguard).
If your child is over 18 years old, you will not be able to get this information without their consent. If they are unable to give consent because they do not have mental capacity, you will need an order from the Court of Protection to investigate and report to them, so you can be given access. Find out more: Child Trust Fund: What happens when your child is 18 – GOV.UK (www.gov.uk)
And 97% of parent carers who use our advice services would recommend them to others.
These are the results of our latest online and helpline bi-annual feedback survey, which ran in March 2023 and had 398 respondents.
“I don’t think I would have known about making a credits-only ESA claim if it hadn’t been for the Facebook group. There’s such a lot of great information and tips on there. The helpline staff are also really knowledgeable and also friendly, which makes it much easier to ask questions.”
“I have used the website and helpline countless times since my daughter was born 16 years ago. Thanks to the advice, we receive the benefits we are entitled to and have ensured that her mainstream education is accessible.”
Thank you to everyone who took part in our survey. The results will help us demonstrate to our funders why their contribution is so important.
Our freephone helpline and all local offices will be unavailable from 5pm today, Thursday 6 April, until 9.30am Wednesday 12 April as Contact closes for the Easter break.
You can find lots of advice and support on our website, and our Chatbot Charlie can help guide you through our information and advice to help you find the support you need quickly and easily, whenever you need it – 24 hours a day, seven days a week.
Parallel Windsor is an award-winning fundraising event, taking place on the stunning grounds of the Windsor Great Park on Sunday 2 July 2023. The event offers a wide range of challenge activities for people of all ages, health conditions and abilities.
You’ll also gain access to the Festival of Inclusivity, packed with plenty of inclusive fun and entertainment for the whole family. You’ll enjoy delicious food, picnic areas, live music, arts and crafts, storytelling, sports, as well as information about skills and careers, technology and mobility.
What challenges activities can I do?
“Start together, finish whenever” – walk, wheel or run, there’s no time limit.
Challenge distances include 100m, 1k, 5k, 10k and a unique SuperSensory1k – all with Windsor Castle as the backdrop!
The 100m and 1k events all take place on the Long Walk. The 5k and 10k distances have a lovely route in the Great Park, with the start and finish on the Long Walk.
All ages and abilities and mobility aids are welcome!
How to secure your place
To join us, you’ll need to fundraise £75 for Contact and take on one of the challenge events listed above. You’ll also need to cover the cost of a £10 admin fee.
Worried about meeting the fundraising target? Don’t be. One of our specialist team will be on-hand every step of the way to give you one-to-one support, fundraising materials and tips.
And of course, you can invite your friends and family to join the festival for the day for only £5 per person plus booking fee.
The festival is taking place at 10am on Sunday 2 July 2023 at The Windsor Great Park, SL4 2BD.
As a fully accessible event, Parallel Windsor offers on-site parking, on-site mobility aid rental, accessible toilets, paramedics and a quiet space. All service animals are welcome.
As a parent carer, you’ll already know that it costs more to raise a child with additional needs. This means getting the right financial help can make a real difference – especially when so many families are facing increased living costs.
That’s where Carer’s Allowance can help. As the main benefit for carers, it’s there to offer some financial support if you have a disabled child – but it can be confusing to understand.
That’s why we are inviting you to a special Q&A session with our advisers this Thursday 23 March, between 10-11:30am, in our private Facebook Group for parentcarers!
This is a great chance to get our advice about:
Eligibility for Carer’s Allowance.
How to apply for it.
How it impacts on other benefits.
Whether you can still work and receive Carer’s Allowance.
How to join the Q&A
To take part, you must be a member of our Facebook Group. Simply answer the 3 membership questions when prompted, and one of our moderators will let you in!
Then, visit our Facebook Group anytime between 10-11:30am on 23 March to ask your question under our special Q&A post.
The session will be carried out in writing (not a live video). This means you don’t have to stay for the whole duration: just pop your question in the comments and then come back at a time that suits you to read our reply!
Can’t make Thursday?
Don’t worry, all the questions and answers asked during the session will be available to read in our Facebook Group once the Q&A has finished!
The government has confirmed the Joint Committee for Vaccination and Immunisation (JCVI)’s recommendations for a Covid-19 vaccine booster roll-out this spring.
Those eligible for an additional vaccine dose includes anyone over five years old who is immunosuppressed. Adults 75 and over and residents of care homes for older adults can also get a vaccine booster. Children under 12 will receive a children’s formulation of the Pfizer BioNTech vaccine.
The NHS will contact you if you or your child is eligible for a booster dose.
It includes those with genetic conditions that affect the immune system and those with auto-immune diseases who may require long term immunosuppressive treatments.
What about children in clinical risk groups?
Children and adults in clinical risk groups (as defined in the Green Book p22 [PDF]), but who are not immunosuppressed, are not eligible for a vaccine booster this spring.
This marks a change in the booster programme since last Autumn, when this group could receive an additional dose.
The booster programme – which offers a top-up dose on top of “primary doses” of the Covid-19 vaccine – will run seasonally. The JCVI will advise the government who it recommends receive a booster before each roll-out.
My child has never had a Covid-19 vaccine. How many doses can they get?
The guidance varies depending on when they turned or will turn five.
Tens of thousands of disabled teenagers have a Child Trust Fund savings account, with the average account value is estimated to be around £2,000. However, families of young people who are unable to manage their money as they lack mental capacity have to apply through the Court of Protection to access their Child Trust Fund. This is a lengthy, costly and complex process.
Una Summerson, Head of Campaigns at Contact, said: “This affects every child born between September 2002 and January 2011 who needs help managing money. Non-disabled children get the benefit of these savings hassle free, while some disabled children and their families are faced with an enormous battle to get their own money.
“Preparing for adulthood is already a difficult time for families with disabled children. We fear that many will not have the capacity or funds to use the Court of Protection process, which involves completing around 60 pages of forms. This means that their child’s savings are at risk of remaining locked indefinitely. This money could make a difference during this cost of living crisis.”
It was hoped that a recent government consultation would change this. But last week, the government announced that it would not allow for a new, simplified mechanism – and will instead stick with the current system of asking parents to apply through the Court of Protection.
This was despite 87% of respondents to the consultation saying these changes were necessary.
Are you affected? Sign up to support our campaign to unlock savings
If your child was born between September 2002- January 2011 and needs help to manage their money independently, please sign up to our campaign to unlock savings in Child Trust Funds.
Una added: “Many families don’t know that their child has this savings account, others have decided it’s not worth pursuing due to the difficulties. A small number have been successful in getting their child’s savings and talk about the difference it has made.”
A parent carer’s view
Andrew Turner, dad to Mikey, has been campaigning on this issue for the last six years. He eventually managed to get Mikey’s savings, but is continuing the fight to help other families.
Andrew said: “I really am disappointed and saddened at last week’s government announcement which means the savings of many disabled teens will be unfairly locked away for good. The Ministry of Justice says it recognises the frustration of parents of youngsters unable to access their own savings, but since 2020 have done nothing to simplify the process or make court documents more user friendly.
“The consultation initiative was an opportunity to help young people with learning disabilities benefit from their own savings and to take pressure off their families. During this cost of living crisis, that money could really have made a difference.”
Join us on one of our accessible and jargon-free online workshops for practitioners and get practical ideas about how you can support children with additional needs and disabilities.
We are pleased to announce our Spring series of individually bookable virtual workshops for practitioners, taking place on the following dates:
We understand parent carers, and we want to help you improve your confidence and skills supporting them.
Our virtual workshops for practitioners receive excellent feedback and can help you develop your skills when dealing with families and disabled children.
Prices
These virtual workshops priced at just £75 + VAT will take place via Zoom.
The Disabled Children’s Partnership (DCP) has today published a report that reveals “record-breaking” delays and backlogs to health and social care services facing families with disabled children.
Based on responses from more than 2,000 families across England, the report found:
Halfof parents of disabled children are unable to work and have experienced poverty, because of lack of support for their child.
Three in fourparents have had to give up employment or their whole careers, due to lack of support.
Seven out of ten parents said their disabled children’s health had deteriorated because of lack of support.
Over a third(38%) of parents have experienced marriage/relationship breakdown in the last 12 months as a result of lack of support for their disabled child.
The research also reveals the worrying state of affairs across education, health and social care services:
Only one in three disabled children has the correct level of support from education setting.
Only one in seven families had the correct level of support from social care.
Only one in five has the correct level of support from health services.
What you can do
Please share our social posts on Facebook, Instagram and Twitter.
Today is Rare Disease Day 2023, an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare condition, their families and carers.
We wanted to highlight the work we’re doing through our Rare Condition Support Group Network.
About the network
Rare condition support groups are a lifeline to families. But they often have limited funding opportunities and rely on community fundraising and volunteers to keep going.
Thanks to funding from Pears Foundation, we created the Rare Condition Support Group Network. By being a part of our network, support groups can come together to network, share ideas and expertise and tap into Contact’s wider services for UK families with a disabled child – something we know support groups and the families they work with value.
We have over 300 groups in our network of rare condition support groups, and we have approved 20 grants for small charities. This has already made a positive impact on 37,872 families.
This regular newsletter updates on funding, networking and workshop opportunities, as well as wider information, support and advice from Contact that could be of interest to you and other families your group supports.
Visit our rare conditions page for information on getting support for your child and your family.
Our A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.
If your child is entitled to universal or benefit related free school meals please complete our short survey which will take 5-10 minutes of your time. As a thank you there is also a chance to win a £25 voucher.
Una Summerson, Head of Campaigns at Contact, said: “There are hundreds of UK families with disabled children having to provide a school lunch when it should be free. They are being unfairly disadvantaged.
“We want to understand the scale and impact of disabled children missing out on free school meals, through our short survey. We will use the information to help us support a parent-led campaign for fair access to free school meals.”
Who is entitled to a free school meal?
Pupils in England and Wales in Reception, Year 1 and Year 2 are eligible for universal free school meals. In Scotland all pupils in P1-P5 are entitled to universal free school meals. Wales and London are expanding universal free school meals in September, but we are asking about the situation now – March 2023.
Pupils aged 4-16 who live in a household on low income and in receipt of certain income-related benefits are entitled to a free school meal. Each nation has a different threshold of low income. Find out if your child is entitled here.
Research shows that free school meals reduce cost of living difficulties at the same time as improving results for all children.
Yet there are many disabled children missing out, because they can’t access a free school meal in the regular way. Some are not in school because they are waiting for a suitable place, others are unable to attend school due to physical or mental health conditions. And some are on special diets not catered for at school.
Get the latest SEND updates, benefits advice, practical help caring for your child, plus free workshops and family events in our weekly email newsletter.
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