Some of the government’s plans contain several worrying proposals that could further weaken the rights of families with disabled children and make it even harder for them to access support. As part of the #SENDABetterMessage campaign, with the help of parent carers, the Disabled Children’s Partnership (DCP) have simplified the government’s consultation into 6 simple questions on the most urgent points.
We would encourage parent carers, young people, and anyone else with experience the SEND system including health and social care services to get involved and have your voice heard.
You have until 22 July to share your views.
Will my views on the 6 questions count towards the government consultation?
The DCP have agreed with the Department for Education (DfE) that all responses to the 6 questions will count towards the government consultation. You can also respond to the official consultation if you wish.
What do the 6 questions cover?
Question 1: One of the proposed changes in the government’s reforms is to change the way parent carers pick schools. Instead of a parent specifying a school, a local council would instead give parents a ‘tailored list of placements’ from which to choose.
Would you be confident in being able to get the right school or college placement for your child under this arrangement?
Question 2: How do you think accountability in the SEND system can be improved?
Question 3: Do you agree with the government’s plans to require parents and local authorities to go through mediation before a parent can appeal to the SEND Tribunal?
Question 4: What do you think needs to be done to make mainstream nurseries, schools, and colleges better able to meet the needs of children and young people with SEND?
Question 5: Do you think it possible for a national system of tariffs to meet the specific circumstances of different children and young people?
Question 6: Do you have any other comments on the proposals in the SEND Green Paper? What are the key things you think need to change to improve support for disabled children and their families?
How do I respond to the government consultation?
As well as via the DCP’s 6 simplified questions, you can also give your views via the government consultation here until the 22 July (until 11.45pm). There are 22 questions in the government’s official SEND Review green paper consultation but you can respond to as many or as few of these as you like – so don’t worry if you can’t complete all 22 questions.
Thanks to funding from Pears Foundation, a number of support groups for families caring for a child with a rare medical condition are set to benefit from a grant awarded by Contact later this year.
Rare condition support groups are a lifeline to families but often have limited funding opportunities and rely on community fundraising and volunteers to keep going. Many have been hit hard by the pandemic and found themselves in danger of closing or no longer able to offer the services they once did.
Following an application process, grants will be awarded in September to up to 20 support groups to help them continue the vital work they do providing specialist condition-specific support to families.
The funding will also help us strengthen our rare condition community of support groups by bringing them 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.
Research from the Disabled Children’s Partnership shows that despite lockdown restrictions lifting, many families who care for a child with additional needs remain socially isolated and continue to be heavily impacted by delays to services for their children and family.
The grants we award this autumn and the rare condition group network we’ll develop thanks to this funding, will help groups build their capacity and resilience so they are better able to continue their work at this critical time. It’s also a great opportunity for lots of rare condition support groups around the country to work in partnership with us and deepen relationships with each other, so families have the support they need in the longer term.
Harriet Squirrell, Contact’s family support programme manager.
Rare condition support groups with an annual income of £500k or under will be invited to apply for a grant by Contact this summer. The grants of up to £17,000 each will be awarded to individual groups via a robust application process.
Looking for advice on rare conditions?
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.
An increasing number of parents are being fined for their child’s non-attendance at school – amounting to £3.7 million in fines so far in this school year, according to a report by the BBC.
Contact knows from calls to our helpline that there are a number of children with special educational needs and disabilities (SEND) who struggle with attendance or are on part-time timetables. We saw an 8% increase in calls to our SEN helpline on attendance issues in the six months up to March.
Children with disabilities and health conditions have historically had more absences from school for a number of reasons: health issues, lack of support in school, waiting for a suitable school place, waiting for a first or updated Education, Health and Care Plan (EHCP), as well as being subject to higher rates of exclusion and illegal exclusion. But the pandemic added to this.
Una Summerson, Head of Policy at Contact, said: “The disruption of the pandemic is continuing to impact the school attendance of children with disabilities and health conditions.
“Children with special educational needs may have struggled more than others to get back into a normal pattern of school or may have found it physically challenging to manage a full day after so long off. In some cases children need access to therapies or mental health support, as well as quick processing of assessments of need to help them get back into school. Parents cannot be fined if a child is off for a genuine medical absence. Schools must authorise an absence where a child is ill or has a medical appointment.”
Help and advice on attendance issues
Our website has advice on absence from school, going back to school after absence, information about fines for non-attendance and more.
Parent Emma is part of our campaigner network and worked with us to make this happen. She said: “I am so honoured to have been part of the Out of Energy campaign. I’m so happy speaking out in the media, and your campaign has made such a positive change for disabled children. You’ve done an amazing job. Thank you again.”
But our campaign doesn’t end here. Last week, the Chief Executive of Ofgem Jonathan Brearley said the energy price cap could rise to £2,800 in October. However, our research found that many families with disabled children are already facing bills of that size.
Without better support now and in the longer-term, families could find the gains from the government’s latest support package wiped out.
Families making the case for more support
Thousands of you showed your support for our Out of Energy campaign by signing our letter to the Chancellor. Many of you spoke on TV, radio and to newspaper journalists, highlighting why disabled households have unavoidably high energy costs.
Parent carers like Amy Jonson from Cardiff. Amy is a sandwich carer for her elderly mum and son Jayden, aged 10, who has Cerebral Palsy. She says she has always been good at budgeting, but is struggling to manage these unprecedented rises in energy costs.
Amy says: “My son has cerebral palsy and needs electrical equipment for his care and to take part in everyday life – electric hoists, bed, wheelchair and communication devices. We would be at a complete loss without this equipment.
“On top of that Jayden, can’t regulate his body temperature. When he is home and it’s cold, we need the heating on. That means a third of my income is goes on energy costs. There is very little help. The predicted costs in October could be very serious for us and many other families in a similar situation.”
There is nothing more to cut back on
Kerry Richmond from Suffolk is mum to Oscar, aged 12, who has a rare genetic disorder and complex health needs. She told us: “Equipment we have plugged in or on charge all the time include a hoist and chair lift, standing frame, feeding pump, SATs monitor and Epilepsy monitor. Oscar has an electric changing bed so a spare battery is on charge for that. Two years ago we were paying £250 per month, and that’s been creeping up and up.
“Our bill for February-March this year was £436. It’s frightening, and we are really worried. Oscar needs a daily bath. We are washing him in what feels like a puddle, because we dare not fill the bath too full. There is nothing more we can cut back on.”
Join our campaign network and help us call for longer-term support
We are pleased that the Chancellor has finally acknowledged the extra costs disabled households face.
But families we support still face worrying times, and one-off measures won’t be enough in the longer term. There’s a danger that any gains made could be wiped out if a family with a disabled child has to claim Universal Credit, which for 100,000 families will mean being worse of by more than £1,800 a year as a result of the 50% cut to the lower child disability addition.
We will continue to call for continuing financial support for families with disabled children. Join our campaigner network to be the first to hear about opportunities to take part in our campaign activities.
Through our Out of Energy campaign, we have been speaking to and hearing from families up and down the country increasingly desperate about soaring energy bills.
Over 3,000 have signed our letter backing our calls to government to give more financial help to disabled households, disproportionately affected by higher energy costs. We thank each and every one of you for your support. If you haven’t yet had a chance to sign, there’s just a week or so left before we will deliver it to the Chancellor Rishi Sunak at Number 11 Downing Street, so take action today
We need life-saving electrical equipment
Noor Fatima is mum to Aminah, aged 8, who has Spinal Muscular Atrophy (SMA). Aminah needs a lot of electrical equipment essential for quality and safety of life, including a lift in the family home, a CPAP machine, electrical bed and wheelchair.
Noor, who works for the NHS, said: “Both me and my husband work and we are just about holding it together. I feel so disheartened at how hard it is. Our energy use is high, because we need gadgets and life-saving equipment to help Aminah. There’s literally nothing we can cut back on. It’s not just energy, everything is going up. I’ve noticed an increase of £20-£30 in our weekly shopping bill. I find it scary that we are not being offered any help.
“I would encourage families to sign Contact’s letter, there’s not long left before they deliver it to Downing Street, so make your voice is heard while you can.”
Yesterday the Chief Executive of Ofgem Jonathan Brearley said the price cap is expected to rise to £2,800 in October. Contact’s Out of Energy research found that many families with disabled children are already facing bills of that size.
Costs don’t change with the weather
Una Summerson, Head of Policy at Contact, said: “Even during this warmer weather, families with disabled children have high energy costs. Those costs are constant and don’t change with the weather.
“Families can’t wait till October for the government to act. They need targeted support now. Disability benefits need to be raised in line with current inflation and the energy rebate should be made a non repayable grant for disabled households. We’d also like to see the Warm Home Discount scheme available to more disabled households.
“And that’s the message we will be delivering to the Chancellor in the next few weeks, so show your support for the campaign today.”
A fundamental shift in children’s social care services in England is needed to better support families and vulnerable children, a government-commissioned review has found.
Josh MacAlister’s independent review of children’s social care services, the findings of which are published today, also called for an immediate injection of additional funding.
“Change is now both morally urgent and financially unavoidable. We have a stark choice: keep pouring money into a faltering system or reform and invest to improve people’s lives and make the system sustainable for the future.”
Josh MacAlister, author of the review report
“What we need is a system that provides intensive help to families in crisis, acts decisively in response to abuse, unlocks the potential of wider family networks to raise children, puts lifelong loving relationships at the heart of the care system and lays the foundations for a good life for those who have been in care,” the report said. “What we have currently is a system increasingly skewed to crisis intervention, with outcomes for children that continue to be unacceptably poor and costs that continue to rise.”
For these reasons, the review argued that a “dramatic whole-system reset” is now unavoidable.
It recommended that this be matched with a five-year funding injection £2.6 billion, including roughly £2 billion to build a new ‘Family Help’ system (replacing the existing ‘targeted early help’ and ‘child in need‘ support routes) and £253 million to ensure the country has enough skilled social workers.
Responding to the report, education secretary Nadhim Zahawi said the government is ready to meet the challenge set out by the review and promised to set out plans for “bold and ambitious change” in the coming months.
DCP’s reaction to the final report
The Disabled Children’s Partnership, which Contact’s CEO Amanda Batten chairs, said: “We welcome the review’s call for a reset of the social care system and for an immediate injection of additional funding. We asked the Care Review to take on board our longstanding campaign for the Law Commission to examine the complex and patchwork legal framework for services for disabled children, in order to strengthen and simplify it. We are really pleased that they have adopted this recommendation and we call on the Government to respond.
“We are also pleased that the report recognises that the needs of disabled children and their families differ from other children and families accessing social care – and that disabled young people’s transitions into adult services need to be improved. The review highlights that more needs to be done to strategically integrate education, health and social care for disabled children.
“We were disappointed, however, that the review did not make more specific recommendations to ensure that families living with childhood disability can access the support they need from social care to be able to live a life which is as fulfilled as possible. This action is urgently needed – our research has revealed an annual funding gap of £573 million for disabled children’s social care, and 43% of families with disabled children have to wait over a year to get respite care.
“The recent Special Educational Needs Green Paper said little about social care because the government was awaiting this review. The review now puts the ball back in the court of the Green Paper programme. It is vital that, in taking forward its SEND reforms and its response to this review, the government takes concrete steps to improve the support provided to disabled children and their families.”
Disabled children in Birmingham and their families got the chance to explore exciting exhibitions and sample chocolate treats at Cadbury World thanks to a Warwickshire Freemasons grant to Contact.
The £150,000 grant meant we were able to offer 40 families free tickets to Cadbury World at Bourneville where they discovered the origins of the cocoa bean in the Aztec Jungle, journeyed through a chocolate wonderland on the Beanmobiles of the magical Cadabra ride, and enjoyed a 4D Chocolate Adventure Zone and cinema experience.
For many, this was one of the first major outings they have had as a family in many months because of the pandemic.
Harriet Squirrell, Contact’s Family Support Programme Manager, said: “We’re very grateful to WarwickshireFreemasons for their generous grant. Many families have felt alone and isolated during the pandemic and Contact’s Better Together events like this trip to Cadbury World are the perfect antidote. They’re an opportunity for families to share fun experiences, help them make friends and build support networks.”
No words can express how grateful I am for the free tickets to Cadbury World. Watching my youngest daughter Mia and her sister Maisie smile and actually enjoy themselves was beautiful. But without yourselves offering this I wouldn’t have attempted it. For three days I’ve felt sick and so worried about how I would manage and how my daughter would cope. She was a superstar! She coped so well and the staff at Cadbury World were all so helpful and friendly. The queue-jumping wrist band made it possible for Mia to enter the entertainment because waiting is not an option.
The sad thing is I don’t take my children anywhere as I fear I won’t cope, my car isn’t ideal to manage Mia and I need PA support. The changing facilities were a bonus, as this is one reason I don’t go out.
Bumping into other parents made you feel like you weren’t alone. I just wanted you to know what these tickets meant to us all today. I would love to return to Cadbury World again.
A parent carer who came on the Cadbury World trip
The grant from WarwickshireFreemasons comes through the Masonic Charitable Foundation, which is funded by Freemasons, their families and friends from across England and Wales.
Peter Manning, the Deputy Provincial Grand Master from WarwickshireFreemasons, said: “I’m very pleased we’ve been able to help Contact to offer families in Birmingham with disabled children an opportunity to have this unique experience and hopefully have loads of fun. We know it’s been a particularly difficult time for disabled children and their families, and we hope that their trip to Cadbury World has been enjoyable and full of chocolate and excitement!”
97% are satisfied/very satisfied with our telephone helpline.
91% are satisfied/very satisfied with our social media channels.
95% are satisfied/very satisfied with our website.
86% are satisfied/very satisfied with our live chat service.
“I have looked for advice everywhere, I even sent e-mails to local MP, to the council, GP, school…Contact was the first one who gave me an answer about what my rights are. I am very disappointed that other institutions do not know the law and that is their obligation. Thank you Contact!”
Survey respondent
What matters to us most is that our service makes a difference. So we are pleased that of the same respondents:
96% feel better informed about how to get support.
91% feel more confident.
82% know what their next step will be.
And 97% would recommend Contact to other parent carers.
“Contact has always made a difference to my family ever since I was told about them. Extremely knowledgeable and have helped and told me so much I had no idea about. They are very patient and will answer the same.”
Our fundraising team work tirelessly to find the money we need to keep going and newest member of the team, fundraising assistant Hannah Hassouni, joined us as part of the Kickstart scheme – a government initiative to help 16-24 year olds on Universal Credit and at risk of long-term unemployment due to their circumstances.
Hannah says: “In the three months I have been at Contact I’ve learnt so much about how charities work, and the real difference grants offered by foundations and trusts make to Contact and the families it supports. I’ve also been working on Contact’s online Fledglings shop, by looking for corporate businesses who might help fund Fledglings products for special needs schools.”
Hannah pictured far right alongside other Contact staff members attending a recent event for families
Contact is committed to being an anti-racist organisation that actively strives for greater equity, diversity and inclusion for both our families and our colleagues. We understand that an individual’s circumstances can play a huge part in their ability to get a foot on the work ladder and that traditional routes through education don’t work for everyone. That’s why participating in schemes like Kickstart and securing ongoing funding for roles like Hannah’s, are vitally important to us.
Hannah’s role will be funded by Kickstart until June, when sadly the government scheme comes to an end. During her time with us Hannah has not only helped us to raise funds, she has pushed us to consider things differently, contributed to open conversations about race and how we can reach more families from Black, Asian and minority ethnic communities.
Hannah continues: “I am really enjoying my job. After leaving education I found it hard to find a job and I am so grateful to Contact for employing me. I feel I am thriving in this environment and truly believe I’ve found my ideal career! I’ve learnt so much from my new colleagues who are really committed to teaching me about all the different parts of the charity sector. I really hope I can continue at Contact once my Kickstart placement ends.”
Peter Beeby, CEO of Prospectus who helped us recruit Hannah to the role says “I think it’s a great way of supporting young people into work, and for me introducing young diverse talent into the charity sector.”
If you are a funder who can help us replace the support Kickstart offered please get in touch by emailing fundraising@contact.org.uk.
The government wants to know what parent carers, children and young people, professionals and other stakeholders like Contact think about its proposals and to help shape how a new SEND system will work in the future.
The SEND and Alternative Provision Green Paper is a large document but you can read the summary of the Green Paper and you don’t have to respond to every question in the consultation. A summary of the Green Paper is also available in the following languages: Punjabi (Gurmukhi); Polish and Urdu.
The deadline for responses to the government’s consultation is 1 July 2022.
The Green Paper is split into key areas in the SEND system that need change and make proposals for that change including:
Ending the postcode lottery by introducing national SEND standards. There will be legislation to support this as well as a new Code of Practice
New statutory SEND partnerships led by local authorities. These will work with parents and carers to review local need and provision and produce a local inclusion plan
Changes to Education, Health and Care (EHC) plans including a standard national digital format and a change to the current process for naming a school
Improved provision in early years settings and schools with a focus on inclusion and early intervention
Greater accountability built into the system
Support for implementation – the new SEND system will align with other developments in education, health and social care.
Responses from other organisations to the SEND Review Green Paper
A generous grant from Nottinghamshire Freemasons meant that Contact was able to offer 20 families a free session at the Woodland Adventure Zone where they were able to take part in fully accessible outdoor activities like the centre’s 90m zip-wire, climbing wall and abseiling.
For many, this was one of the first major outings they have had as a family in many months because of the pandemic.
The grant from NottinghamshireFreemasons comes through the Masonic Charitable Foundation, which is funded by Freemasons, their families and friends, from across England and Wales.
“Thank you so much for arranging the Forest Adventure experience. Our family had a wonderful day experiencing activities we never dreamed were possible for us ALL to enjoy together as a family. The instructors were amazingly patient, understanding with a wonderful can-do attitude making the afternoon run seamless. We met with the fundraisers and our thanks go to them too. I hope they were able to see for themselves what a difference their efforts are able to provide to our families, often isolated and not able to engage with any leisure activities as a family.”
Parent carer Vania
Harriet Squirrel, Contact’s Family Support Programme Manager, said: “We’re very grateful to Nottinghamshire Freemasons for their generous grant. Many families with disabled children have felt so isolated during the pandemic and Contact’s Better Together events like this wonderful visit to the Woodland Adventure Zone are the perfect antidote to this. They’re an opportunity for families to share fun experiences, help them make friends and build support networks.”
John Pawlik from Nottinghamshire Freemasons said: “I’m very pleased we’ve been able to help Contact offer families in Nottingham with disabled children an opportunity to have this unique experience and hopefully have loads of fun. We know it’s been a particularly difficult time for disabled children and their families, and we hope that their activity day at the Woodland Adventure Zone has been enjoyable and full of excitement.”
A new investigation into Disabled Facilities Grants (DFGs) shows that there are long and growing waits for assessments and for adaptations to be completed in the homes of disabled children.
DFGs are grants to help with the costs of works to the home to make life easier, like installing a stair lift or building accessible bathroom facilities.
The Bureau of Investigative Journalism’s Disabling Homes project, found that families are turning to crowdfunding to pay for major adaptations to their homes, due to delays in getting the grants. Many have to live with reduced independence and dignity for years.
Una Summerson, Contact’s Head of Policy, said: “This investigation reflects the findings of our Counting the Costs housing survey, which found that 41% of families with disabled children have a home that doesn’t meet their child’s needs and in many cases this is putting their child at risk.”
Alexa Woodcock, whose 15-year-old son Finlay has cerebral palsy and is visually impaired, said: “We moved into a new house on 8 October. I contacted the housing team to explain that we’d moved and that we didn’t have a stair lift, naively expecting support.
“I was told they were too busy and couldn’t assign an Occupational Therapist (OT). The bathroom is upstairs. During my son’s EHCP I discussed my concerns and my son’s OT organised a commode. For months my 15-year-old son had to go to the toilet in the kitchen and I carried him upstairs to shower him. I then had to bump him down the stairs on my knee. In February we thankfully got a stair lift, but we shouldn’t have had to wait for so long for something which is vital to the dignity and safety of Finlay and me. All the time, I was worried that if I hurt myself lifting him then I have no idea who will care for him.”
Alexa is trying to raise the funds needed to make significant adaptations so that Finlay can have the best home life possible. You can contribute to their GoFundMe here.
Today chancellor Rishi Sunak set out the government’s plans to help families with the cost of living crisis in his Spring Statement. But there was very little help announced for carers and families with disabled children facing soaring bills.
Amanda Batten, Chief Executive at Contact, said: “Families with disabled children will be hugely disappointed with today’s Spring Statement. There was nothing to recognise the massive extra costs that disabled households face with their energy and other household bills.
“We know from our latest Out of Energy campaign research that families with disabled children are already paying £600 more for energy than other households. That’s before the unprecedented energy price rises coming next week. Families with disabled children are reliant on life-saving electrical equipment. It would be dangerous for them to cut back on their usage. They are anxious as to how they are going to cope with soaring bills.
“And there was nothing to alleviate those concerns today. At the very least we wanted to see the £200 energy rebate announced in February converted to a non-repayable grant for disabled households.”
The only support measure aimed at vulnerable families was an extension to the £500m Household Support Fund, which was launched in October 2021 to help households with essentials such as food, clothing and utilities. However, it is unclear how the scheme will operate in each local authority and we are concerned that some families may miss out due to varying eligibility criteria or application processes.
Amanda added: “Where is the help for families who are unable to get paid employment due to caring responsibilities? They contribute enormously to the economy by shoring up our NHS and social care sector, but there was nothing for them. The only reference to vulnerable households is in giving more to the Household Support Fund. But we know that discretionary grants are not a good targeted measure for cash-strapped families with disabled children, who are time-pressured.”
Join our #OutOfEnergy campaign
We know that families with disabled children already pay £600 extra on energy costs compared to all households. A third of respondents to our Counting the Costs survey said they have gone without heating in the last 12 months — and as energy prices rise, we have huge concerns about how families are going to cope.
Contact’s new Out of Energy campaign is calling on government and energy companies to help families with disabled children with their higher energy costs. Find out more about what we’re asking for and help us take action via our campaign page.
Advice from Contact
Our advisers have put together a list of schemes, grants and tips to help families access financial support and reduce their energy use.
Help with utility bills
There is help available so make sure you are getting everything you are entitled to.
Most children who get the higher rate of the Disability Living Allowance (DLA) mobility component qualify on the basis that physical problems severely restrict their ability to walk — but that isn’t the only route.
Even if your child has no physical problems with walking, they might still qualify for the higher rate of mobility if their behaviour is very difficult to deal with. This usually applies to children with a learning disability or autism spectrum disorder.
The specific tests used by the DLA Unit in deciding whether a child qualifies for the higher rate mobility on the grounds of ‘severe mental impairment’
When some children who have frequent episodes where they refuse to walk might qualify for the higher rate mobility
Common arguments used by the DWP in refusing higher rate mobility and how these might be challenged
This webinar will be presented by Derek Sinclair, who leads Contact’s Family Finance team. To find out more about this webinar and to sign up, visit our Eventbrite page. After registering, you will receive a confirmation email containing information about joining the webinar.
Can’t make 24 March?
We have lots of information about DLA and other benefits on our website. Take a look at our DLA parent carer guide, read our factsheet on claiming DLA higher rate mobility for children with learning difficulties or autism spectrum disorders, or use our FAQs tool for information about some of the most popular topics we get asked about.
We will also post a recording of the webinar on our webpages shortly after the event has taken place.
New to webinars?
A webinar is a presentation live on the internet. You will be able to hear presentations live, follow the slides and submit questions for the presenters to answer.
You will need a home computer, laptop, tablet or smartphone.
The survey takes less than 10 minutes to complete, and there is a chance to win a £100 voucher if you complete the survey by Monday 21 March.
Your answers will help us call on government and energy companies to help families with disabled children with their higher energy usage.
Why are we asking you to take this survey?
We know that families with disabled children often experience higher energy costs. This might be due to specialist equipment powered by electricity or extra washing due to continence issues. Some disabled children are less mobile and get colder quicker, and others have health conditions that mean they can’t regulate their body temperature.
The cost-of-living package announced in February 2022 was welcome, but none of the measures recognised the higher energy costs facing disabled households. We at Contact are campaigning on a range of measures aimed at helping families with their higher energy bills, but we need your help to make a stronger case for change with government and energy companies.
Yesterday the Children’s Commissioner estimated that 1.8 million children are persistently absent from school.
Contact knows from calls to our helpline that there is a sizeable number of children with SEND who are not in school or only there part-time. And we have seen an 8% increase in calls to our SEN helpline on attendance issues in the last six months compared to the same period last year.
Children with disabilities and health conditions have historically had more absences for a number of reasons: health issues, lack of support in school, waiting for a suitable school place, waiting for a first or updated Education, Health and Care Plan (EHCP), as well as being subject to higher rates of exclusion and illegal exclusion.
Severe absence of SEN pupils triple the rate of other pupils
But the pandemic has added to this. A report by the Centre for Social Justice, Lost but not forgotten, found that in Autumn 2020, the rate of severe absence for pupils on SEN support was close to triple the rate of pupils with no identified SEN.
Amanda Batten, Chief Executive of Contact, said: “Attendance issues for disabled children is not new, but it has certainly worsened. The disruption of lockdowns, as well as children told to shield for many months, has had an impact on the school attendance of children with disabilities and health conditions.
“There are some children shielding until they have their second covid jab in April. For those that are back, there are children still on part-time timetables. Children with autism who struggled with changes to routine, are continuing to have difficulty getting back into a normal pattern of school. And children with health conditions have found it physically challenging to manage a full day at school after so long off.
“In many cases what is needed is urgent access to therapies, and mental health support and quick processing of assessments of need, to enable children to get back into a normal school routine.”
Increase support to help children back into normal school routine
Contact knows of families who deregistered their children from school due to shielding. Some deregistered siblings of shielding children, to protect them.
The number of families with disabled children choosing to home educate or feeling they have no choice but to home educate due to lack of suitable provision, also rose during the pandemic.
We are hearing from more parents being threatened with fines due to their child’s poor attendance.
The Children’s Commissioner has today called for local authorities to keep a better record of children who are not attending school. Dame Rachel de Souza said urgent action was needed to identify the children most at risk, and the reasons why they miss school.
Amanda Batten added: “Children with SEND experienced disruption to and absences from education long before the pandemic. Sadly this has worsened and we must ensure that the support they need to get them back into school routines is available.”
Family experiences
“My son has been diagnosed with ADHD and anxiety and has dropped to 80% attendance. They are threatening with fines. My son is being failed by the system and everything is such a fight. The school are happy to send him home every time he has a panic attack.”
“My daughter was shielding until her covid vaccine, her younger brother is ASD and needed to stay home to keep her safe. The local authority were adamant he should be in school. It was incredibly stressful.”
“I’ve been waiting since last July for my daughter’s EHCP to be updated.”
“My daughter, 14, been to school maybe 6 times in 2 years. System has completely failed her. No help or support. Been to a tribunal and still got nowhere.”
Help and advice on attendance issues
We have advice on absence from school, going back to school after absence, information about fines for non attendance and more.
The Contact family heard last week that our dear friend and colleague, Jill Hardman, passed away on 13 February after a battle with cancer.
Jill helped launch Contact’s Special Educational Needs (SEN) helpline over 10 years ago and led our team of dedicated education advisers to deliver SEN advice and help to parents worried about anything to do with their child’s education – from support in school and school transport to getting an EHC plan and education beyond 16.
During her time at Contact Jill helped literally thousands of parents struggling to get the right support for their children in school either by directly talking to them on our helpline, answering their social media queries and emails, running Q&A sessions on Facebook, writing content for our education guides, factsheets and webpages as well as advising journalists and decision makers on the impact government policies have on the families Contact supports.
Micheala Stewart, one of Jill’s colleagues on the SEN helpline, said: “Jill taught me everything I know about SEN law and I feel this a small legacy to Jill’s expertise and knowledge. I and the rest of the team will miss her enormously.”
Jill’s manager, Angie Fenn, said: “I’ve worked with Jill at Contact for many years. Jill’s knowledge and experience is greatly missed, she was so committed to supporting and empowering parents enabling so many to secure education provision, a school place and challenge poor practice. Jill also had a great sense of fun and was a supportive and collaborative colleague who embraced trying new things and challenges. I’ve been proud to work alongside her.”
Contact’s CEO Amanda Batten paid tribute to Jill saying: “Jill was there helping parents understand the huge changes to the England SEN system back in 2014 and established our then new education advice line. More recently she supported parent carers through the turbulance of the pandemic and the impact it’s had on children’s schooling. Jill was absolutely passionate about Contact and the families we support, helping many thousands of families and children throughout her career. She made a huge difference to so many lives and although we will miss her greatly, she leaves a huge legacy at Contact.”
About our SEN helpline
Contact was awarded a Department for Education contract to establish a new and unique country-wide service for families of children with special educational needs in 2011 and the Special Education Needs (SEN) National Advice Service launched in 2012. Since then, we’ve expanded our online education information – all written by our SEN helpline team – and introduced new ways to reach us, including our website Live Chat and our helpline enquiry form. Our FAQs tool helps website users quickly find answers to the some of the questions we’re most asked about on the helpline.
Thousands of parent carers got in touch with our new SEN National Advice Service when it was first launched in 2012, proving that this service was much needed by parent carers navigating the extremely complex and often confusing SEN maze. Since then, the number of education enquiries continues to grow year on year. In 2021 just under 5,500 education enquiries were responded to by our parent advisers.
Today is Rare Disease Day 2022 – an opportunity to raise awareness and generate change for the 300 million people living with a rare condition worldwide.
The strategy, which was developed by NHS delivery partners in consultation with the rare conditions community, promises faster diagnosis and new treatments as part of 16 commitments to improve care for the 3.5 million people living with a rare condition in England.
For families, for example, the Department of Health and Social Care has pledged improvements to newborn screening so that diagnoses can be made earlier. This includes a new research pilot using whole genome sequencing to screen for rare genetic conditions in healthy babies.
You can read the Rare Diseases Action Plan in full here. Wales, Scotland and Northern Ireland will publish their own action plans by the end of the year.
How Contact helps families of children with rare conditions
It can sometimes be harder to get the information you need if your child has a rare condition. That’s where Contact comes in.
You can also learn more about rare conditions on our website.
Still trying to get a diagnosis for your child?
Visit our webpages all about diagnosis to find out about the process of getting a diagnosis and how to get support if your child doesn’t have a diagnosis.
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