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.”
Accessibility means the steps transport providers are taking so that disabled people, those with medical conditions and other access needs can use the service. The committee has launched the inquiry after hearing from campaigners and charities that various modes of transport are not easy to access. Research has found that those with access needs are less likely to travel and feel less confident when doing so.
The inquiry will examine both public and private modes of transport. It’ll review how providers are enforcing accessibility laws and where there are gaps. It will also consider remedies for those who have been excluded.
The Contact Weekly Lottery was launched two and a half years ago to help fund our vital support services for families with disabled children. Since then, we’ve had 2,254 winners and given away £33,305 in prizes!
We only have a small number of players compared to other charity lotteries, but incredibly, we now have the pleasure of telling around 50 lucky people every single week that they’ve won a prize.
What makes our lottery so special is that most of our £1,000 and £10,000 winners have been parent carers. They tell us they play to help support other families like theirs.
It couldn’t have come at a better time for parent carer Rebecca, who won £1,000 in November.
“Being a parent of a child with disabilities, the money will help us out as we’ve lost the use of our car and have no way of getting another.”
Rebecca, our £1,000 winner from Farnborough
Another one of our highlights from 2022 was our £10,000 winner back in August. Marie from Birmingham has two children with autism and wanted to help families like hers. When we called to tell her the good news, she couldn’t believe it was real!
“Knowing the money I pay each month can help so many families with disabled children is overwhelming.”
News today that free school meals will be given to all London primary schools next year shows the importance of ensuring eligible disabled children don’t miss out.
Una Summerson, Head of Campaigns at Contact, said: “The scheme in London has been launched to reduce cost of living difficulties at the same time as improving educational attainment for all children. It really does highlight the importance of free school meals.
“And yet there are hundreds of disabled children across the UK who are missing out. Some are not in school because they are waiting for a suitable place, others are unable to attend school due to mental health problems. And some are on special diets not catered for at school. We should be doing everything to help them and their families. That’s why we are supporting a parent-led campaign calling for food vouchers to be given to eligible disabled children unable to access free school meals.”
Missing out: Danielle’s story
Danielle has two children who are both eligible for free school meals but are unable to access them.
Thea, aged 7, has ARFID, Autism and ADHD. ARFID stands for Avoidant/restrictive food Intake Disorder – it’s a relatively new term for a condition where people avoid certain foods and eat small quantities. She also has a dairy allergy. Thea has a very limited diet, in fact she has eaten the same food every day for over 4 years. This means that she can’t eat school dinners and has a packed lunch every day.
Mum Danielle and daughter Thea
Danielle’s son is 10-years-old and is autistic. He is currently under alternative provision and has not accessed education since June last year due to autistic burnout. Due to his absence from school he has been unable to have school dinners and no vouchers have been issued as a replacement.
Can’t access due to their disabilities
Danielle said: “I am a single mum and a parent carer. I am unable to work due to caring for my son, who is now at home 24/7. I have asked the school who in turn asked the local authority to issue me with vouchers to replace the meals that my son and daughter can’t access due to their disabilities. So far they have refused, despite giving out vouchers during lockdown. £30 a week in vouchers would help me greatly and it seems unfair that we are shut out from this help through no fault of our own.”
There are lots of reasons why a disabled child might not be able to take advantage of a free school meal including:
Not being in physical attendance at school due to a long-term medical condition.
In attendance but cannot eat the meals provided due to dietary requirements or sensory processing difficulties.
Home learning while waiting for a school placement.
Child’s needs cannot be met in a school setting and so is home learning or have Education Otherwise Than At School (EOTAS).
Una Summerson added: “We want local authorities to fulfil their obligation to offer disabled children who are unable to access a free meal in the regular way at school, an alternative in the form of a supermarket voucher.
“Currently a free school meal is valued at £3 per day. There are 190 days in a school year, so that’s £570 of financial help over the course of a year that some disabled children are missing out on.”
Our We Love DLA month is all about increasing awareness and take-up of this key benefit that helps meet the extra costs of raising a disabled child. It is particularly important in the current climate with a sky-high cost of living.
Biggest rise in children entitled to DLA
There have been great strides in recent years encouraging take-up of DLA. Last year, there was an increase of over 52,000 children entitled to DLA, representing a rise of 9.5% – the biggest in recent years. There are now 603,076 children entitled to DLA.
In Scotland, where the Child Disability Payment is replacing DLA, there were an estimated 43,720 children receiving the new benefit by 30 September 2022 according to Social Security Scotland.
Derek Sinclair, Senior Parent Adviser on Contact’s Helpline, said: “We think the increase in children entitled to DLA is due to a combination of factors, including an increased number of children identified as disabled and families struggling financially due to the cost of living and so seeking to maximise income.
“On top of that there is better awareness of DLA, reduced stigma in claiming and better resources to help families claim. Despite all this, Contact estimates the benefit is still underclaimed.”
Income boost for families struggling with the cost of living
There have been large rises in children identified with a disability or additional need in recent years, due to better identification and medical advances. Government figures show that there are almost 1.5 million pupils in England with a special educational need or disability. The figure for the whole of the UK will be higher.
Not all will be eligible for DLA, but some will be – and these are currently missing out on a potential income boost of £24.45 to £156.90 each week.
“It can make a real difference to a family’s overall income and other outcomes such as reducing isolation. Many families describe getting an award of DLA as life changing as it gives them choices.”
What our DLA month is all about
During this We Love DLA month, Contact will be highlighting all the amazing resources we have to help families claim DLA. We know that it’s not an easy process, but we have videos, parent guides, Facebook Q&As and lots more to help you.
We’ll also be busting top myths about DLA – such as the myth that a child needs a diagnosis to claim DLA, which is just not true.
And later this month we will be asking you what you use your child’s DLA for, so please join in the conversation and let us know!
Resources to help you claim DLA
Contact has a host of resources to help families claim DLA for their child:
Visit our DLA webpage to learn more about this essential benefit;
For help with completing the DLA form, take a look at our top tips webpage which provide both general advice and detailed tips on each section of the form. Make sure to watch Derek’s expert advice videos as you scroll down the page too;
Watch our DLA Higher Rate Mobility webinar for even more in-depth advice on the eligibility criteria for this component and how best to explain your child’s needs;
Unpaid carers – including parent carers – are providing more hours of care now than they were 10 years ago.
That’s according to the latest census data by the Office for National Statistics (ONS) about unpaid carers released last week. The census happensevery 10 years and gives a picture of all the people and households in England and Wales, including the number of unpaid carers and those living with a disability of health condition.
The Census 2021 reveals there are more people providing 20-49 hours of unpaid care each week compared to 2011. There has also been a slight increase in the number of people providing 50 or more weekly hours of unpaid care.
And there are now more unpaid carers who are aged between 29-49 than those aged 50-64, dispelling the myth that carers are always older people.
Support services cut back
Una Summerson, Head of Policy and Campaigns at Contact, said: “Parent carers will not be surprised by this data, which confirms what they have experienced over the last 10 years – support services being cut back, so they are left to do more, often complex, care in the home themselves.
“Many of the families we support are not only caring for their disabled child: they also have elderly parents, who need help and support. And reduced support services – respite care, physiotherapy, occupational and speech and language therapy, as well as mental health services – means they are providing more care and are less able to combine work and caring.”
Growing number of children with additional needs and increased elderly population
Surprisingly, the census results showed that the overall number of unpaid carers has reduced in the last 10 years. It had been widely expected to show an increase due to rising numbers of children with special educational needs and disability (SEND), as well as a rapidly growing elderly population.
In England alone, now there are just under 1.5 million pupils with SEND – an increase of 77,000 in a year – due to advances in medicine and better awareness and identification of additional needs.
Una added: “Many parents don’t identify themselves as unpaid carers because they are looking after their son or daughter. There is a lot of work to do in helping people recognise themselves as carers, so that they can tap into help available.”
In its analysis, the ONS also suggested that the unexpected drop in the overall number of unpaid carers could be attributed to wording differences between the 2011 and 2021 census questions, as well as to the impact of the Covid-19 pandemic on household mixing, reduced travel and higher death rates in the elderly population.
Caring More Than Most
Following the last census, Contact commissioned the University of Leeds to analyse the data relating to families with disabled children.
Our subsequent report, Caring More Than Most, highlighted the unacceptable difference in the quality of life and opportunities available compared to other carers and families unaffected by disability.
Help available for parent carers
Carers need and deserve better financial support. We want the government to increase the rate and earnings threshold of Carer’s Allowance to allow more parents to work without losing this important benefit. Take part in our Carer’s Allowance campaign.
We’re happy to be supporting a parent-led campaign calling for food vouchers for eligible disabled children unable to access free meals at school.
About the campaign
Natalie Hay, a parent carer, started this campaign after realising that many disabled children eligible for free school meals are unable to access them.
Why can’t some disabled children access free school meals?
There are a variety of reasons why some disabled children might not be able to access meals at school.
These include:
When a child is not in physical attendance at school due to a long-term medical condition.
When a child attends school but cannot eat the meals provided due to dietary requirements or sensory processing difficulties.
When a child is home learning because they are waiting for a school placement.
When a school setting can’t meet a child’s needs, so they are home learning or have Education Otherwise Than At School (EOTAS).
Why is this such an issue?
These families with disabled children are being disadvantaged. They have to provide a school lunch when it should be free.
“When every child was learning from home during pandemic lockdowns reasonable adjustments were made. Every child was helped.
When disabled children are learning from home, no reasonable adjustments are made and barely any are helped.
This needs to change.”
Parent Natalie Hay
Contact backs parliamentary bill
Tomorrow, the second reading of Zarah Sultana MP’s private members Free Schools Meals (Primary School) Bill takes place in Parliament.
This provides an opportunity to raise awareness of the current inequality in free school meal access for disabled children.
The Bill has a wider aim to extend eligibility for free school meals to all children in state primary schools. Contact has sent a briefing note regarding the current difficulties disabled children are facing.
We are hopeful that MPs will raise this issue in the debate tomorrow.
Get involved in the campaign
If your child has missed out on their free school meal, please join the parent-led Facebook group to support this campaign.
You can also email your local MP about the issue. Please email [email protected] for a template email.
Too many children in England are still waiting for a suitable school place, despite it being two weeks into the second term of the school year.
Some children are in school while on a waiting list for something more suitable. Others are not in school as they wait for a school place that can meet their needs.
Parent carers like Robert Martin, who co-chairs the Leicestershire Parent Carer Forum SEND Hub, were forced to give up their careers to look after their children at home because no suitable education options were available locally.
Our Head of Policy and Campaigns, Una Summerson, was interviewed on the radio about the fact that, sadly, this is not an isolated case.
“We hear from many parents who are unable to secure a school place or have to go through a lengthy battle, perhaps going through tribunal to get the right school place for their child,” Una said. “This puts unnecessary extra pressure on families that are already dealing with all sorts of additional pressures in their lives.”
More funding needed to release pressure on specialist school places
Una said: “Without support in place some children with SEND start school refusing, some are put on part-time timetables, are excluded, or develop emotional and mental difficulties.
“As a result, more families are looking to specialist school places, leading to increased pressure. There must be more money put into the SEND system by government to address these issues. We understand that local authorities have been facing unprecedented financial challenges for many years now. But we must do better for disabled children. We would like to see greater accountability for councils who do not meet their legal duties to provide an education for all children.”
Sadly, one of the symptoms of not getting appropriate support is a child might be at risk of suspension or exclusion from school.
That’s why tomorrow we are running a special Facebook Q&A session for families in England with our SEN team at 10am. Join our Facebook group to take part.
The Chancellor must do more to help disabled households
Una Summerson, Head of Campaigns at Contact, said:
“We are deeply concerned that further energy price rises and a withdrawal of the £400 energy discount from April 2023 will have dire consequences for many families with seriously ill children.
“More than a third are already cutting back on life-saving electrical equipment or getting into debt to keep the heating on.
“We, together with other charities, urge theChancellor to do more to help disabled households. This includes consulting on social tariffs as soon as possible.”
What is a social tariff?
A social tariff is a targeted discount energy deal for qualifying consumers. It is a safety net for eligible households who might be struggling to afford their bills. It is typically below the price of the cheapest available energy tariff and targeted at those living in fuel poverty or on a low income.
Our research of 3,893 families with disabled children, exclusively revealed on Channel 4 News, found that households with seriously ill and disabled children are paying on average £1,596 extra a year to run vital equipment.
That’s why we are calling for an energy assistance payment for families of seriously ill and disabled children. This is to cover the cost of running lifesaving medical and disability equipment.
Cameron, who had both Cystic Fibrosis and Duchenne Muscular Dystrophy, sadly passed away when he was five years old after spending nearly three of those years in hospital.
Every year on 19 June, we celebrate Cameron’s birthday alongside his family with our annual fundraising event, Dinosaur Day, because Cameron loved dinosaurs – his favourite being a green triceratops called Troy.
Why was the Stop the DLA Takeaway in Hospital campaign so important?
Contact supported the Mathieson family’s long and ultimately successful landmark legal challenge that went all the way to the Supreme Court in July 2015.
Because of the Mathieson family’s determination, and with the help of our campaign, hundreds of families with the most disabled and poorly children are no longer denied financial help when they need it most.
What have we achieved thanks to Cameron and his family?
A new law was introduced on 29 June 2016 meaning that no child in hospital would have their DLA suspended if they are in hospital for 84 days (or 28 days if aged 16 or 17 on PIP).
In addition, where a child first makes a claim for DLA when they are in hospital, they no longer have to wait until they are discharged home before those payments can start.
This law continues to benefit hundreds of children and families every year and is definitely something to celebrate on Cameron’s birthday.
Claiming DLA can be tricky, so we are inviting you to a special Q&A over in our closed (private) Facebook group. Join us there on Thursday 24 June between 10am – 12 noon.
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