Attendance is one of the top concerns on Contact’s helpline. Children with additional needs may have different reasons for being off school including appointments, anxiety and unmet need in school.
The government’s Moments Matter, Attendance Counts campaign upset some parents because it didn’t acknowledge those difficulties publicly. While the guidance does mention it, the poster campaign does not.
Imogen Steele, Education Policy Lead at Contact said: “We are concerned that the government’s attendance drive puts pressure on schools to only accept 100% attendance at a time when there is increasing unmet need leading to more children with disabilities unable to attend school. It could lead to a lack of understanding in schools about the reasons why a child with a health condition or disability might be off school. This could put parents and schools in an adversarial position.”
We asked for parents to contact us with their stories so that we can share their situations with the Department for Education to increase understanding. And we are delighted to have a blog from a parent sharing their school attendance experience.
A parent’s story
I am the parent of two autistic children. Both my children had 100% attendance throughout school, until a time when they were unable to maintain the level of masking they had previously.
My daughter, aged 15, was able to mask her difficulties completely. So much so, that none of the staff even knew she was struggling. They didn’t see her meltdowns in the bathroom cubicle or her exhaustion when she got home at the end of the school day. They didn’t understand the toll her disabilities took on her body and mind and they didn’t acknowledge how difficult it must have been for her to function whilst battling with insomnia. They didn’t see why she chose to sit in the car until the bell was about to ring each morning.
The fact she got up every single day and pushed herself to get into school was courageous. There were times when she told me she didn’t want to go and cried. I told her firmly that she must. After all, going to school is what children do and parents must work, so what other option did I have?
I drove to work in tears and awaited the secret text from the toilets. There were times when she felt unable to disclose her discomfort and I made excuses to collect her early.
She was able to push down her own emotions and prioritise the feelings of others above her own. She felt guilty asking for the day off and so she continued to mask.
These Moments Mattered. I taught my daughter that she shouldn’t listen to her own body and mind. She should ignore her own needs and please those around her. Of course, I didn’t realise that’s what I was teaching her at the time.
Masking
My youngest’s disability meant that masking was incredibly difficult. But for a whole year, I told my son he had to go to school and that I had to go to work. I helped him feel better about going by inviting friends over for tea and I used lots of distracting strategies to get him into his uniform, out of the door, into the car, through the gates and into class. But none of these things were enough to make the setting appropriate for him.
The school system didn’t feel safe to him. His disabilities meant that the uniform was uncomfortable and he became unable to wear it. There were issues with friendships and teachers and more than anything the demands of school. He eventually stopped engaging with the learning.
I advocated for support and reasonable adjustments. But by the time I was listened to, his meltdowns were so bad, and his mental health began to suffer. I began to question why I was sending him somewhere that was causing such distress.
I realised that my priority was the mental health of my children.
These were the Meaningful Moments that Mattered. The moments where I listened to the voices of my children. The moments where I empathised with their experiences. And the moments where I advocated for their voices to be heard by others. I was finally in full attendance in my role as their Mother.
Would you like to write a blog on attendance?
We would like to hear from parents whose disabled children are unable to attend school. Please get in touch with [email protected] if you would like to write a blog sharing your personal experience of the current 100% attendance policy. Once you get in touch, we’ll be able to help you put something together. We’ll be sharing these blogs with all political parties in the hope of influencing future attendance policy.
Our partners at Autism Central have launched a new webinar series called ‘Finding the Balance’ to support parents and carers of autistic people to learn more about looking after their own wellbeing.
In the six webinar episodes, Dr Naomi Fisher and Eliza Fricker discuss key themes for parent carers including the impact of self-critical thinking, and what we can do to be more compassionate with ourselves. Each episode features a conversation on a different wellbeing topic such as looking after yourself and dealing with other people – with entertaining and relatable illustrations and practical exercises to try.
Contact is one of nine not-for-profit organisations that make up Autism Central – a project that provides parents and carers of autistic people easy access to autism education, training and support in regional hubs across England.
Together with Ambitious about Autism, we run the London and Midlands hubs which offers group and one-to-one sessions to help parents and carers find the information and services available in your area. We may also run events such as workshops, drop-in sessions, coffee mornings or virtual meet-ups.
Today, Friday 26 April is Undiagnosed Children’s Day – an important campaign organised by SWAN UK (Syndromes Without a Name), to help 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 and around a third of families who get in touch with our rare conditions officer at Contact have a child with an undiagnosed condition.
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.
If you don’t have a diagnosis for your child, we have lots of information on our website, including:
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.
Carer’s Allowance overpayments have increased in the last year, official data shows. This is despite the government pledging to address the issue in 2019.
In recent months Contact has heard from parents who have had a small lump sum pay rise which has pushed them over the Carer’s Allowance earnings limit, so they have had to pay it back. Some have been worried about, others have had to refuse a pay rise for fear of losing their Carer’s Allowance.
Fear of losing Carer’s Allowance
Anna Bird, Chief Executive of Contact, said: “During this cost of living crisis every penny counts for families with disabled children. Families are telling us they are working harder than ever in the home and at work to care for their child as well as make ends meet. To hear of families on low incomes having to turn down a well-earned pay rise for fear of losing their Carer’s Allowance is shocking.”
Contact has long campaigned for improvements to Carer’s Allowance – an increase in the weekly payment, an increase in the earnings limit and the removal of the cliff edge when a carer earns over that limit and loses all their benefit. As well as reforming the system so that carers who study or claim a pension are not penalised.
Over the limit
Lisa Jenkins said: “I currently work 15hrs a week in school catering for my local authority at £9.96hr. (My wages are skimmed off to pay me through school holidays as I work in school catering).
“Last April we were awarded a pay rise (which brought us to the current limit of £9.96). However the payment wasn’t made until November, so I had 7 months backdated in my November pay. This took me over the Carer’s Allowance earnings limit. I now have to pay back £383, and I’ve had my Carer’s Allowance suspended since February.
“I can’t work anymore hours, I struggle to do a full month with my little boy because he has so many illnesses. I’ve been left to feel like I’ve committed a fraud and purposely pulled the wool over their eyes.”
In 2019 it was revealed that the Department for Work and Pensions intended to recover £150 million in overpaid Carer’s Allowance from 80,000 carers. At the time, the National Audit Office warned that the Government had failed to consider the impact the fines will have on already vulnerable families – many of whom are unemployed due to caring responsibilities. And we alongside many other disability charities warned that the majority of cases of overpayment are due to innocent mistakes by the claimant or the DWP’s own administration errors.
Punitive system
Contact urged the DWP to drop its pursuit of carers for overpayment and continue to do so.
Anna Bird added: “Instead of pursuing carers for repayment, we urge the Department for Work and Pensions to address the Carer’s Allowance earnings threshold. It is an indictment on our welfare system that carers who are doing so much are faced with such a punitive system.”
If your earnings are slightly above the limit, you can look at making deductions for example paying for childcare costs or into a pension scheme to ensure you keep your Carer’s Allowance.
We’ve been working in partnership with the National Development Team for Inclusion (NDTi) since 2021 to support to young disabled people aged 16-25 in England to help them build confidence and make plans for the future.
Funded by the National Lottery Community Fund, our Time to Talk project also helps families, carers and professionals to raise aspirations and encourage independence for the young people they support.
Join us online and celebrate!
As we come to the end of the Time to Talk project, we’d like to invite you to a series of online sessions taking place from 10-13 June, to celebrate this work and share learning.
Join us and discover ideas and evidence of how personalised strengths-based approaches enable young people to build confidence, set their own goals, prepare for adulthood and have their voices heard. You’ll also hear from young people about their lived experiences, journeys and achievements.
All sessions are free and open to all including young people, family members, those working in youth and community sector, careers, participation, advocacy, education, social care and health sector. You can join as many sessions as you choose.
In a speech earlier today , Friday 19 April, the Prime Minister Rishi Sunak announced plans to carry out major reform of Personal Independence Payment (PIP). No details were provided of how PIP will be changed other than that reforms will be focused on reducing the numbers of adults with mental health conditions who qualify.
In his speech the Prime Minister also announced:
A consultation on reform of the fit note process including moving the responsibility for providing fit notes from GPs to ‘specialist work and health professionals’
Bringing forward the managed migration of employment and support allowance claimants onto universal credit. Originally scheduled for 2028, this will now happen sooner although the new timetable has not been confirmed
Tightening of criteria used in work capability assessments although this may refer to changes already announced in last year’s Autumn statement
The introduction of a new Fraud Bill in the next Parliament.
Derek Sinclair, Contact’s benefits specialist said: “Contact is extremely concerned that rather than look at how best to support disabled people struggling with a cost of living crisis, the proposals announced today seem driven by a desire to make spending cuts regardless of the very serious impact this will have on many disabled young people.”
If you have a disabled child, or you are on a low-income or not working, you may be entitled to certain benefits and tax credits to help with the extra costs you face. Visit our webpage for more information.
Today, Tuesday 16 April, in England and Wales is primary school national offer day . Today, families will find out if children without an Education Health and Care (EHC) plan in England or a Statement of SEN or Individual Development Plan (IDP) in Wales have received their preferred primary school.
Unfortunately, some parents won’t get the place they want. Don’t panic: we’re here to help.
What if I’m not happy with the school offer?
In the first instant, we recommend that you accept the school place offered if you can, even if you aren’t happy with it. This means your child will at least have a guaranteed school place ifother options fail.
Then, there are a number of things you can do:
Keep your child on the waiting list for any schools you originally applied for; sometimes there is quite a bit of movement before September.
Put in a new application for other schools not on your original list.
Appeal for any school where you applied and were turned down.
Appealing for a school place
You can find out more about appealing for a school place on government websites:
Carers in England, Scotland and Wales are now entitled to one week’s unpaid leave to fulfil their caring responsibilities.
The Carer’s Leave Act becomes law today, granting 2.3 million carers (source: Carer’s UK) new rights to leave from their first day of employment.
Working carers – which includes anyone providing or arranging care for a relative or dependent – will be able to take the unpaid leave in half or full days.
All parents have the right to up to four weeks’ parental leave a year to care for their children. This is usually unpaid, though some employers have more generous provisions.
To be eligible for parental leave, you must have been working for a company for at least one year. You must also give at least 21 days’ notice for any leave you take.
Employees are also entitled to time off for dependents to deal with any immediate situations.
We’re creating new resources on continuing care, and we want to hear from families already getting an NHS-funded continuing care package.
Our helpline is receiving a growing number of calls from parents having issues with continuing care funding. Often families face difficulties with the fraught process transitioning to adult continuing healthcare.
Assessments, including assessments for carers and young people ahead of the move.
How local authorities can charge for adult services.
Personal budgets and direct payments.
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 14 March from 10am-11.30am when our team of parent advisers will be waiting to answer your questions. Put the date in your diary!
This includes extra resources – including £110 million extra in 2024/25- to provide the Department for Work and Pensions (DWP) with additional capacity to process disability benefit claims. Currently, people claiming benefits such as Disability Living Allowance (DLA) and Personal Independence Payment (PIP) face very lengthy waiting times. This extra funding is designed to make sure that decisions are made in a ‘timely manner’ moving forward.
Other benefits announcements include:
Increasing the maximum time someone on Universal Credit has to repay a “budgeting advance” from 12 to 24 months. A budgeting advance is a loan of Universal Credit. This will apply to loans taken out from December 2024 onwards. This measure should ensure that claimants repay smaller amounts, but over a longer period of time.
Increasing the Child Benefit earnings threshold from £50,000 to £60,000. This is the maximum amount you or your partner can earn before Child Benefit starts to be clawed back via income tax. Alongside this, the rate at which Child Benefit is clawed back will be halved. This means you will only repay the whole amount of Child Benefit if you earn £80,000. Currently, you repay the whole amount of Child Benefit if you earn £60,000. Both these changes will take place from April 2024.
The Chancellor announced a consultation on changing the Child Benefit system so that it is based on a household’s earnings, rather than individual earnings.
Mr Hunt also announced extra funding to extend the Household Support Fund for a further six months. Local authorities use this to provide support with essential costs to vulnerable groups in their areas.
Today, Chancellor Jeremy Hunt set out the government’s plans for the country’s finances in the Spring Budget. But there was very little announced that will help families with disabled children and young people.
Samantha Tolmie, mum to Lewis, had written to the Chancellor asking for extra financial support for families like hers. She appeared in a BBC News film highlighting the situation she and others faced with energy costs and cuts to benefits. Here she reacts to today’s budget.
Ignored
Samantha says:
“Families like ours were pretty much ignored in today’s budget. We won’t benefit from the announced tax cuts. I worked for many years as a PA, and I adored my job. I had no choice but to give up employment to care for Lewis full-time. I’d dearly love to work, but I am now a carer around the clock. As a result, I am entirely reliant on benefits.
“There was nothing in recognition of the massive extra costs that disabled households face, which have been cruelly exacerbated by the cost of living crisis. I pay £500 a month for energy, which powers all Lewis’ life-saving electrical equipment. That is unlikely to change, except to go up, as Lewis is able to breathe only with the ventilators and other essential life support equipment. I won’t get any more of the cost of living payments to help towards those costs as they have come to an end, and there was no extension of these announced today.
“In fact, the only support measure aimed at families experiencing financial difficulties was a six-month extension to the Household Support Fund. This has of course been very welcome, but like the cost of living payments, barely scratches the surface.”
Faced with debt
Samantha continues:
“It is hugely disappointing that yet again families like mine have been let down. We are left to muddle through, faced with debt and the prospect of losing our home. We just want help and genuine, valid support to care for our children as best we can.”
As well as extra financial support for families, Contact, working with over 100 disability charities as part of the Disabled Children’s Partnership (DCP), had also called for increased funding for disabled children’s services.
The Chancellor did announce extra money to build additional special schools. But there was very little to address the wider systemic issues of a funding shortfall for SEND support in mainstream schools and social care on top of a workforce shortage and increased demand.
Money for additional special schools
Anna Bird, Chief Executive of Contact and Chair of the DCP, says:
“We hear time and again from families with disabled children who cannot access the help they need from education, health and social care. The cost of living is leaving them isolated and unable to enjoy the family life others take for granted, and preventing their children from thriving.
“There is an immediate need for increased funding for support. 70 Conservative MPs wrote to the Chancellor at the weekend to call on him to invest £4.6bn annually in special educational needs and disability services.
“We, therefore, welcome the £105million for 15 additional special schools in the budget. We are pleased that the Chancellor has recognised the need for more specialist provision. However, it is only a tiny part of the picture. It does not explain where the specialist staff for these new schools will come from. Nor does it address the need for more specialist support in mainstream schools; nor the wider needs of disabled children and their families. There remains an annual funding gap of £573million for social care alone.
“This funding must be followed by more sustained investment, alongside stronger accountability, so that parents do not have to fight for the support their children need.”
Schools must follow certain procedures before making a decision to suspend or exclude a disabled child, such as increasing their SEN support or considering alternative disciplinary measures.
Similarly, local authorities have a legal duty to arrange suitable alternative education for a child who has been excluded.
But despite these requirements, exclusion continues to be a top concern for families who phone our helpline. Many parent carers call us feeling worried because their child was suspended or permanently excluded and want to find out about their rights or how to challenge the school’s decision.
Ask us anything at our Q&A on 7 March
That’s why we are running a special Q&A about school exclusions in England on Thursday 7 March, between 10-11.30am, in our closed (private) Facebook Group.
This will be a chance for parent carers in England to share their concerns and ask our education advisers any questions they may have about school suspensions and exclusions.
You might need more information or advice on:
What factors must be considered before a decision is made to exclude a child
Whether your child’s behaviour can be considered grounds for exclusion
Your rights to challenge suspensions or exclusions
Getting education support whilst excluded
How to take part in our Q&A
You must be a member of our Facebook Group for parent carers to take part in this Q&A session. Joining our group is easy: simply answer the 3 membership questions when prompted and one of our moderators will let you in.
At 10am on 7 March, Contact will publish a special Q&A post in the group where you can ask any questions in the comments. One of our education experts will reply to your comment with advice based on your situation.
The Q&A will be carried out entirely in writing – it will NOT include a video livestream.
Can’t make it on 7 March?
Don’t worry: after the session is finished, you will still be able to read through all the questions and answers shared during our Q&A at a time that suits you.
Today, Thursday 29 February, is Rare Disease Day 2024, the globally-coordinated movement on rare diseases (conditions).
We support Rare Disease Day each year. The event is as an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare condition, their families and carers.
Our work supporting rare families
Throughout our history, we have worked with families with rare conditions, bringing them together, providing advice and support, and highlighting the unique issues they face.
Here’s a look at some of the things we’re up to at the moment.
Upcoming online workshops
We run a range of online workshops tailored to families with children who have rare conditions.
We have a number of upcoming sessions running from now until May, on topics such as understanding diagnosis, managing sleep, parent wellbeing and supporting siblings.
Contact Scotland Rare Information drop-in day in Glasgow
Our team north of the border are holding a rare information drop-in day on Friday 8 March, 10am-3.30pm at The William Quarrier Scottish Epilepsy Centre, Glasgow G51 4QD.
Find out about rare condition support and information, updates on developments, and a wide range of services and grants available to you and your family – all in one place.
Come and meet Contact, plus local and national charities including Office for Rare Conditions Glasgow, Genetic Alliance UK, TSC Support Scotland, Rare Revolution, Family Fund and many more.
Rare advice and support
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.
Rare Conditions Network toolkit for support groups
Now, we have created resources to support the charities who are part of our Rare Group Network. Our Rare Conditions Network toolkit includes advice on managing volunteers, guidance on using social media, and our group action pack.
We’ve created a new animation for families caring with a child with hemiplegia to share with their child’s school and other people that work with them to help them understand the condition better.
HemiHelp – the charity that supported families with children who have a condition called hemiplegia – became part of the Contact family in 2018.
Since then, Contact has continued to support families living with hemiplegia with vital information and resources.
Sign up to receive our free HemiHelp e-newsletter full of the latest information and news for families caring for a child with hemiplegia including our upcoming parent workshops and family events.
If you’re new to DLA or Child Disability Payment, this is your chance to ask our helpline advisers any questions you might have — such as who is eligible, how to claim it, or how best to describe your child’s needs in the form.
How the Q&A will work
To take part in the Q&A, you must be a member of our Facebook Group for parent carers. Simply request to join, answer the three membership questions when prompted, and one of our moderators will let you in!
The session will be carried out in writing – it will not include a video livestream. This means you can stop by our Facebook Group at any point between 10-11:30am on Thursday to write a comment with your question under our special Q&A post, and then come back later to read our team’s reply.
Can’t make it on Thursday?
If you can’t attend the session, don’t worry! The Q&A post will remain available to read in our group after the session is over, so you’ll be able to flick through the questions and answers anytime.
We also have lots of information and advice about DLA and Child Disability Payment on our website to help you claim.
Parents in England eligible for 15 free childcare hours for their two-year-olds from 1 April 2024 are advised to apply before 28 February to ensure they get the offer in time.
The recommended application window runs from 15 January to 28 February 2024. You can apply outside of these recommended dates, but you might not receive your code in time. You must have a valid code by the end of the month before a new term starts.
Note: Disabled two-year-olds may already be eligible for or receiving 15 hours’ free childcare – see more below.
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.
From September 2025, working parents of children aged between nine months to three years will be eligible for 30 hours of free childcare a week.
Who is eligible?
Eligibility will match the existing 30 hours offer for working families of three- and four-year-olds.
There are income-based requirements to meet, with exceptions around disability and caring responsibilities. We have information on our paying for childcare website.
How do I apply?
Apply for the scheme via the gov.uk website, where you’ll also find details of existing government schemes.
In England, all three and four-year-olds are entitled to 15 hours of free early education/childcare for 38 weeks of the year, regardless of their parents’ work and income.
Free childcare for disabled two-year-olds and those in low-income households
Contact would like to see an increase in the amount of money disabled households can get towards adapting their homes.
Currently families can claim up to £30,000 through the Disabled Facilities Grant if they are assessed as needing adaptations to their home, such as installing a stair lift or putting in a downstairs bathroom. This amount has been capped since 2008 and due to the increased cost of equipment and building work, it is now worth a lot less in real terms.
Shortfall
Anna Bird, Chief Executive at Contact, said: “This is an area of huge frustration for families. We hear from many having to make up the shortfall through fundraising. Many are carrying on with inappropriate housing – carrying children up and down stairs, bathing children in paddling pools in their living room.
“Our research found that over a quarter of families with disabled children say that their home makes their child’s condition worse or puts them at risk. This can send families into crisis, and we know the costs of helping families at that point are much, much higher. Getting the right equipment and environment so families can look after their child at home, saves money in the long run.”
Longer-term solution needed
An external review commissioned by the government in 2018 recommended that the upper limit of the Disabled Facilities Grant should rise in line with inflation. The government did put an additional £100 million into the pot for Disabled Facilities Grants in 2023 for two years, but Contact believes a longer-term solution is needed.
One family, Contact is in touch with through our Decent Homes campaign, has been waiting two years for adaptations to give Finlay, aged 17, the independence he needs. Although the family has been assessed as needing adaptations, the council will only pay £40,000 towards the costs, which are £94,000.
He can’t access the kitchen
Mum, Alexa, said: “I work full-time as a teacher and we are maxed out on our mortgage, so we can’t meet the shortfall. The house doesn’t work for Finlay, he can’t get into the kitchen, he can’t get to the fridge. A local company gifted us a festival toilet which is a portakabin on the back of the house. We are really grateful but it’s not a long term solution, as it’s freezing in winter.”
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