The rules that govern when a young disabled person in education can claim Universal Credit are extremely complex . That’s why advisers from our Family Finance Team are inviting you to ask any questions you have about this at a special Q&A session on Thursday18th January between 10am – 11.30 am on our Facebook Group.
How to join our Facebook group
Joining our Facebook Group is easy. Just answer a few simple questions to register and you’re in!
Join us there on Thursday 18th January from 10am-11.30am when our team of Family Finance advisers will be waiting to answer your questions. Put the date in your diary!
The Universal Credit rules
The benefit rules prevent most young people in education from getting Universal Credit. However, some disabled students can qualify for Universal Credit. This includes young people who either:
have taken part in a DWP medical assessment and established that they have a limited capability for work before they started their current course; or
remain in full time non advanced education beyond the August after their 19th birthday.
Get advice before claiming Universal Credit
Even if your child falls into one of these groups and can claim Universal Credit it’s not always a good idea to do so. This is because they will stop being treated as a dependent child and as a result any Child Benefit, Child Tax Credit or other payments that you receive for them as dependent child will stop.
Making a ‘credits only’ claim for new style Employment and Support Allowance
Contact recommends that disabled teenagers undergo a work capability assessment when they turn 16 to try to establish that they have a limited capability for work early on. Doing this can increase their chances of being able to claim Universal Credit at a later date if they either change courses or stay in non-advanced education past the age of 19.
But here’s the catch: if you simply ask the DWP to carry out a work capability assessment, they are likely to refuse. The only way to make sure an assessment takes place is by making a ‘credits-only’ claim for new-style ESA. Your child won’t qualify for the ESA payment itself, but the DWP will have to carry out a work capability assessment as part of the claims process and this may help them to get Universal Credit at a later date.
The role is a fixed term contract for three years. The closing date is Monday 15 January at 10am. The hours per week are flexible and working term time is also available.
The role would be suitable for a parent carer wanting to take a step back into paid employment. We’ll offer training, so don’t let that put you off applying.
You can find more information about the role, job pack and application form on the Work for Contact section of our website.
Tips on completing application form
The section called ‘General experience and further information’ is the most important section. We use this to decide who to interview for interview.
Provide examples of how your experience paid or voluntary meets each of criteria listed in the job specification.
Don’t worry about gaps in paid employment. Remember, you can use your experience and skills as a parent carer fighting for support to show how you meet the job criteria.
Last year, we had the privilege of supporting 291,000 families across England, Scotland, Wales and Northern Ireland with our advice and information. This includes helping eligible families increase their household incomes by an average £5,400 a year, through our Family Finances team.
More of you than ever before made use of our Listening Ear service to find emotional support, practical advice and a shoulder to cry on and over 20,000 of you are members of our private Facebook group sharing advice and supporting each other.
Help us be there for more families in 2024
We just wouldn’t be able to do what we do without the generosity of our supporters so, if you can, please consider helping us to be there for more families in 2024.
Together we are making a difference for families with disabled children
Huge thanks to the thousands of you who took action last year to improve things for your family and others by writing to your MP, filling in one of our surveys or speaking out in the media. And with more than 200 of you becoming a Contact Changemaker, we continue to make sure parent carers are at the heart of our policy and campaigning work.
355 fantastic families took part in our annual DinoDay fundraiser and raised an incredible £15,000 for Contact – and we were delighted that 5 big £1,000 winners of our weekly lottery were all parent carers like Samantha.
Nearly 128,000 parent carers across England are now members of their parent carer forums, working in partnership with their local authorities, health providers and education settings to make sure that services in their area meet the needs of disabled children and their families.
Our online Fledglings shop celebrated 25 years of providing products designed for children with additional needs in mind and we made it more accessible to families whose first language is not English by making it available in a number of different languages for shoppers.
We ran our first ever Rare Conditions conference in 2023, giving parent carers of a child with a rare condition the chance to meet and share experiences and learn more about Contact’s rare conditions work.
Take care and remember, we’re here for you in 2024 whatever your child’s condition and whenever you need us.
From all of us here at Contact, we want to wish all our families a very Happy Christmas!
We hope you’re enjoying the holidays. But remember, if you’re looking for help while our helpline is closed until Tuesday 2 January 2024, you’ll find lots of advice and support on our website.
Our Chatbot Charlie can help guide you through our online information and advice so you find the support you need quickly and easily, whenever you need it – 24 hours a day, 7 days a week. Look out for Charlie at the bottom of our website on the right hand side.
The government’s annual Special Educational Needs and Disability (SEND) Statistics show that 98% of parents win on appeal once they get to tribunal – meaning that just 2 per cent of refusals by councils to provide SEND support were upheld in tribunal decisions last year.
At the same time the number of SEND tribunals has gone up by a record 24 per cent.
The statistics published by the government today show that the situation has got even worse.
Anna Bird, Contact’s CEO and Chair of the Disabled Children’s Partnership says: “Even more parents are having to go through the expense and stress of a Tribunal hearing despite Tribunals finding in their favour in a staggering 98% of cases.
“This shows the system is fundamentally broken. The government and local councils must take action to make sure the right, lawful decisions are made first time, so that parents do not have to take legal action to get the support their children need and are entitled to, and to prevent this needless waste of public money.”
The statistics published today illustrate what we at Contact already know: that parents know what support their children need, and have to fight tooth and nail to get it.
The DCP is calling for government to ringfence resources for early information, advice and support for parents navigating the system; better training for local council staff so they make the right, lawful decisions first time and stronger accountability.
We made someone’s Christmas last week when we called to tell them they’d won £1,000 in the Contact Weekly Lottery! Samantha from Manchester was in disbelief when she matched five numbers in our draw to land herself this fantastic windfall.
Samantha, whose two daughters have ADHD and her eldest is also autistic, discovered our weekly lottery through Facebook and decided to give it a go.
“I’m in disbelief I have won, actually speechless! I’ve only been playing for three or four months, so it’s very unexpected but hugely welcomed.
I found out about the Contact Lottery on Facebook as I’m a parent to two girls with ADHD and my eldest also has autism, so I thought I’d give it a go and give something back whilst trying my luck.
I can’t believe it actually worked and I won something! I’m really looking forward to a brilliant Christmas now and I would encourage everyone to sign up.”
Samantha and her family.
How to join our lottery
Join Contact’s Weekly Lottery for as little as £1 a week and get a chance to win up to £10,000.
Not only that, you’ll also be helping fund our support services for families with disabled children. It’s a win-win!
On Wednesday, Chancellor Jeremy Hunt set out the government’s plans for the economy in his Autumn Statement. Read our CEO’s response.
Below we outline some of the main benefit changes relevant to families with disabled children.
Benefit changes at a glance
The Chancellor announced:
Uprating working-age benefits and disability benefits next year in line with consumer price inflation of 6.7%.
Lifting the freeze on the local housing allowance, which caps benefit payments towards rent in the private sector. Local housing allowance will increase so it covers the cheapest 30% of properties in each area. This should mean more help with rent for private tenants on Universal Credit or Housing Benefit.
Confirming the introduction of a new ‘Back to Work Plan’. This will target jobseekers who ‘disengage’ via a stronger sanction regime and more intensive work coach support.
Expanding DWP programmes that support mental and physical health. This includes a new WorkWell service to support those at risk of entering long-term unemployment to either enter or return to the workplace.
Abolishing class 2 National Insurance contributions currently paid by self-employed people from April 2024, while allowing self-employed people to continue to access contributory benefits such as the state pension.
As part of a ‘crack down’ on benefit fraud and error, new powers will allow access to data held by third parties such as banks.
Response to consultation on proposed changes to the work capability assessment
The work capability assessment is a disability assessment the government uses to decide how much benefit disabled adults on certain benefits like Universal Credit and Employment and Support Allowance should receive. It also determines whether they should be look for work while claiming that benefit.
There are three possible outcomes of a work capability assessment:
You can be found fit to work.
You can be found to have a ‘limited capability for work’.
You can be found to have a ‘limited capability for work and work related activity’(LCWRA).
The government intends to scrap the work capability assessment and replace it with the Personal Independence Payment assessment. However, that change is not expected to take place until 2026/27 at the earliest.
In the meantime, the government intends making changes to the work capability assessment. This will see a reduction in the number of new claimants having a LCWRA. In responding to a consultation, the government has confirmed that it plans to make these changes from April 2025, for new claims only.
Understanding limited capability for work/and work-related activity (LCWRA)
If you have a limited capability for work, you don’t have to look for work, but you must still take part in work-related activities to get you more ready for work. For example, you may have to take part in training. Having a limited capability for work does not lead to any additional benefit payments.
However, if you have LCWRA, you won’t need to meet any work-related conditions like job seeking or training. You’re also eligible for an extra amount of benefit.
Changes the government is proposing
Substantial risk to health
The government plans to amend the rules that allow a disabled person to be treated as having a LCWRA where taking part in work-related activity would place them or others at ‘substantial risk’. These rules will become more restrictive.
Although yet to announce full details about how it will apply the new rules, the government says that it will protect those with physical health problems. This means that where being taking part in work-related activities would lead to a deterioration in your physical health, the government will protect you as someone at substantial risk.
Mobilising
It also plans to remove difficulties with mobilising from the list of activities used when deciding whether someone has a LCWRA. Currently those who cannot mobilise for more than 50m without pain or discomfort are one of the groups having a LCWRA.
The government claims that those with the most significant mobilising needs will not lose out as a result of this change. Instead, the substantial risk rules will treat them as having a LCWRA.
Difficulties in physically mobilising will still factor in deciding whether someone has a limited capability for work.
Getting around
In assessing whether someone has a limited capability for work, there will be a reduction in points awarded for difficulties in getting around without the help of another person, for example due to mental health problems.
Other changes consulted on
The government has decided that it will not proceed with proposed changes in how the work capability assessment deals with problems with incontinence or in engaging in social engagement.
Anna Bird, Chief Executive of disability charity Contact, said: “Now into a second year of sky-high costs for food, heating, rent and mortgages, families with disabled children say they face a constant battle to keep afloat. Disappointingly there was little in yesterday’s Autumn statement to alleviate the hardship many are experiencing.
“There was no targeted support and no commitment to a social tariff to help with families’ higher energy costs. Families with disabled children pay £1,600 a year more than other households for their energy, to run vital equipment like ventilators, adjustable beds, hoists and suction pumps. They now face a difficult winter without the support they desperately need.
“The Chancellor chose to focus on tax cuts rather than investing in public services that disabled children and their families depend on. Families are exhausted from filling gaps in support for physiotherapy, speech and language, as well as mental health services. Over the last 10 years support services have been cut back and families are left to do more, often complex care. This has devastating impacts on their wellbeing and their ability to be in paid employment.
“On top of this the lack of action on fixing the Carer’s Allowance earnings limit, is another blow to those families who would like to combine caring with paid employment.”
We will spell out what the Autumn Statement 2023 means for families with disabled children in more detail soon.
NICE, the body that reviews and evaluates treatments, has concluded that some effective therapies available on the NHS should no longer be prescribed to new patients on cost grounds.
Cystic fribrosis (CF) is a progressive genetic condition that leads to problems with breathing and digestion over time. Around one in 2,500 babies are born with the condition.
NICE has spent a year evaluating a relatively new class of “modulator therapies” that can improve lung function, growth and weight gain in people with CF.
Patients with CF told the NICE evaluation team that the new treatments had transformed the disease from a progressive and life-limiting condition into a manageable chronic condition.
But the therapies are expensive, and NICE is now recommending that no new patients are offered the drugs. Patients already on the drugs will continue to receive them.
“We are being forced into a situation where we are going to have to watch our daughter deteriorate year on year until she dies at a very young age. I just can’t do that,” Charlotte Perkins, mother of a 17-month baby told the BBC last week.
Share your views in the NICE consultation
People have until 24 November to respond to a consultation on the guidance.
Today, MPs debate the Kings Speech, which sets out the government’s plan for the year ahead. Opposition MPs are using the debate to highlight data that shows over two million children could be regularly missing school by 2025 if the number of pupils absent from classrooms continues at the current rate – one in four of all children currently at primary and secondary school.
Contact welcomes the focus on persistent absence and calls for greater understanding of children with special educational needs and disabilities (SEND) and why they feature so prevalently in persistent absence figures.
Unmet need
Una Summerson, Contact’s Head of Policy, said: “Absence rates for pupils with SEND are significantly higher than their peers. And they are rising, especially across special schools. This is often down to unmet need.
“Just under 40% of calls to Contact’s helpline come from parents who say the school or local authority is not providing the right support for their child. We also hear from parents that the school environment and culture is sometimes detrimental to their child’s needs.
“A focus on mental health is important, but we also need to look at other reasons that children with SEN may be absent. This includes medical reasons, a lack of support in school, delays in assessment for support, lack of suitable school places and disproportionate use of exclusion on children with SEND.”
There is also a disproportionate number of pupils with SEND who are home educated, with reported pressures to do so. Contact has long called for a compulsory register of children who are home educated.
Earlier this year Contact submitted evidence to a parliamentary inquiry on persistent absence. The committee’s report stated: “growing demand for mental health services and special educational needs support, as well as cost-of-living pressures, have compounded a problem that worsened following the Covid lockdowns but remains present”.
Advice for families whose children are absent from school
We have information for parents about absence from school for medical reasons, how to support children back to school after a period of absence and the use of fines for parents whose children are persistently absent.
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.
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.
Bring Halloween indoors this year! For a calmer and more familiar trick or treat experience, family members can get dressed up and hide in different rooms. This way your child will have plenty of doors to knock on for treats.
Use social stories and play YouTube videos of fireworks at gradually louder volumes to slowly help your child what to expect.
Ear defenders like these in our Fledglings shop block out loud firework noises or visiting trick or treaters and come in a range of colours. Visit our Fledglings shop for some other great product ideas to help make Halloween and Bonfire Night easier.
Practise Halloween with your children first. A daylight “trial run” may help your child get familiarised with the trick-or-treat route ahead of time and feel more confident about what to expect on the day. It’s also a good opportunity to make sure their costume is comfortable (and itch-free!)
We all know Halloween and Bonfire Night can get pretty noisy and scary, so make sure you have an ‘escape plan’ in place so that children with sensory processing issues have somewhere they can go and feel safe. For example, you could set up a dark sensory den set up at home and filled with fun toys!
For a fun sensory-friendly costume idea they can still use after Halloween, you could turn a body sock into a spooky devil or dragon.
Don’t let your neighbours ruin your child’s Halloween! Tell them in advance about any special requests: no strobe lights, loud noises, face covers.
If you’re not taking part in Halloween this year, put up large signs on your door. Even with no lit pumpkin on your doorstep, trick-or-treaters could still come knocking.
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:
The need to speak to their safe person to help with regulation.
Access to assistive technology, for example pupils with selective mutism who use their phone to communicate, or those who are visually impaired and need apps to convert text to speech.
The need to use phones to monitor health conditions such as Type 1 diabetes. Phones are vital as they are used to read blood glucose levels, control insulin pumps and alert someone to when they are going into hypoglycaemia.
For those with complex medical conditions that cause them to collapse, phones allow them to call for assistance if they cannot alert anyone in the school because no one is near or can hear them. For instance, if they collapse in the toilet.
Pupils with Social, Emotional and Mental Health (SEMH) needs often rely on phones to feel comfortable enough to attend school.
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.
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!”
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.
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).
Some secondary school-aged children (Years 7 to 11).
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.
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?
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.
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 [email protected].
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.
If you want to contribute you views on supporting and safeguarding disabled children to our consultation response, please email our health lead Amanda on [email protected].
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.
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