Disability Living Allowance or DLA, is the main benefit for disabled children under 16 in England, Wales and Northern Ireland. It’s there to help you pay for the extra costs of caring for a child with a disability or condition.
This is your chance to ask our helpline team any questions about what DLA or Child Disability Payment is for, who is eligible, and how to claim it. You can also get advice about any concerns you may have about how best to describe your child’s needs.
Our Intro to DLA & Child Disability Payment Q&A session will be carried out in writing – it will not include a live video. 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.
Can’t make it on Thursday?
Don’t worry if you can’t attend our session. The Q&A will stay up in our group after the session is over, so you’ll have a chance to read through all the questions and answers later on.
New ONS census data out this week has found that there has been a large increase in the number of disabled girls aged 10 to 14 and 15 to 19 years of age. Between 2011 and 2021 the numbers rose from 6.8% to 12.2% in England and 7.1% to 13.3% in Wales.
Contact thinks this is due to a combination of factors including later diagnosis in girls for autistic spectrum conditions, plus a greater awareness of autism. As well as the fact that girls are more likely to have mental health problems in their teen years, as shown by various studies.
More likely to mask
Amanda Elliot, Contact’s Health Lead, said: “Autistic girls are more likely to mask – many going undetected in primary school because in early years there’s a lot of parallel rather than socially interactive play and they can be academically able. And the early years system and professionals are not as good at recognising the signs of autism in younger girls.
Unacceptable waiting times
“Difficulties start to emerge with the increase in hormones at the same time as more academic and social demands. There needs to be better diagnosis of autism in the early years to ensure children, both girls and boys, get the help they need as early as possible. Waiting times for diagnosis for autism also need addressing urgently as some are waiting an unacceptable length of time.
“We know that there is a rise in post 18 diagnoses, which we believe is because it is much easier to get an adult autism diagnosis that a child diagnosis – far fewer barriers.”
Help is available
We have information about getting a diagnosis and what support is available without diagnosis.
And you can find out more about CAMHS (Child and Adolescent Mental Health Services) on our dedicated web page.
Families describe Disability Living Allowance (DLA) as life-changing. It’s the main benefit for disabled children in England, Wales and Northern Ireland and isdesigned to help you with the extra costs of having a disabled child.
Despite this, we know there’s a lot of confusion and myths circulating about who is and who is not entitled to DLA. As a result, many families could be missing on this vital benefit because they wrongly think they’re not entitled to it.
To help, we’ve fact-checked some of the most common myths we hear about DLA:
Myth: My child needs a diagnosis before I can claim DLA
Reality: You do not need to wait for your child’s condition to be diagnosed before applying for DLA. You can claim DLA so long as it is clear that there is some underlying condition – whether physical, mental or behavioural – which means your child needs extra care or watching over or help in getting around.
Myth: My child’s disability isn’t the right type to get DLA
Reality: DLA is not only for children with complex disabilities. You can claim DLA if your child has learning difficulties, autistic spectrum disorders, emotional and behavioural conditions, physical disabilities or a condition of any other type.
Myth: I can’t claim DLA for my child because my earnings are too high / I’m working
Reality: DLA is not means-tested so it doesn’t matter whether you have earnings or savings or whether you are working or not. The only thing that matters is whether your child has greater needs than other children of the same age.
Myth: Children with learning disabilities and autism spectrum disorders cannot get higher mobility rate under DLA
Myth: I can’t claim DLA because my child is very young
Reality: You can claim DLA for your child from the age of three months, or from birth if your child has a terminal illness. It can be harder to claim for a young child because all infants need a high level of care. However, if your child needs a different type of care, or care more often than other infants, you have a good chance of an award.
Myth: There is no point in claiming DLA because the money will be deducted from my other benefits
Reality: DLA is never deducted from other benefits you get, and it is always ignored as income. DLA is paid on top of other benefits you might be receiving like housing benefit, tax credits or Universal Credit for example. In fact, getting DLA can trigger other financial help too like Carer’s Allowance.
DLA is available to families living in England, Wales and Northern Ireland. A new benefit – the Child Disability Payment – replaces new claims for DLA in Scotland. See our webpage on welfare benefits in Scotland for more information.
“Social care plays a vital role in supporting disabled children and their families to live full and fulfilling lives. Children and families have a legal right to this support, but too often it is de-prioritised in light of the other pressures that children’s social care faces. Moreover, where it is provided, it is often only when families hit crisis point, and the process can be stigmatizing rather than supportive.
“We welcome the recognition of these issues and the focus on early help in the government’s publication today. Early help makes all the difference to disabled children and their families, boosting their life-chances and in some cases preventing family break up and a child unnecessarily moving into residential care. However, implementation will be key, and there must be a specific and distinct focus on families with disabled children, including in the family support pathfinders.
“We are also very concerned that the government is investing insufficient funds to take forward the changes at the pace needed, given both the recommendations in the Independent Review and our own analysis, which shows an annual shortfall of over £500million for disabled children’s social care alone.
“Finally, we welcome the announcement of a review by the Law Commission into the legal framework for disabled children’s social care. This is long overdue, given the complex nature of the current law, and creates an opportunity to improve the system for disabled children. This is something that the Disabled Children’s Partnership has been campaigning for over the last five years.
“We look forward to engaging in this review, and it is vital that it is taken forward in full partnership with parents and young people.”
Have your say
The government is seeking views on its proposals for reforming children’s social care.
The inquiry will examine the issue of persistent and severe absence and the factors causing it. And it will assess the likely impact and effectiveness of the Department of Education (DfE)’s proposed reforms on attendance.
The inquiry is looking at the factors causing persistent and severe absence among different groups of pupils, in particular:
Disadvantaged pupils.
Pupils from minority ethnic backgrounds.
Pupils with SEND and those clinically vulnerable to Covid-19.
Pupils in alternative provision.
A big question is how the government can better support schools and families to improve attendance. This includes asking what the impact will be of the DfE’s proposed reforms to improve attendance.
So if this issue affects your family, you know why it happens and you have thoughts on how the DfE can help you, this is a chance for you to share your views.
How to share your experience
If you want to share your experiences of dealing with persistent absence from school, respond to the call for evidence online.
You have until 23:59 on Thursday 9 February to share your views.
Our We Love DLA month is all about increasing awareness and take-up of this key benefit that helps meet the extra costs of raising a disabled child. It is particularly important in the current climate with a sky-high cost of living.
Biggest rise in children entitled to DLA
There have been great strides in recent years encouraging take-up of DLA. Last year, there was an increase of over 52,000 children entitled to DLA, representing a rise of 9.5% – the biggest in recent years. There are now 603,076 children entitled to DLA.
In Scotland, where the Child Disability Payment is replacing DLA, there were an estimated 43,720 children receiving the new benefit by 30 September 2022 according to Social Security Scotland.
Derek Sinclair, Senior Parent Adviser on Contact’s Helpline, said: “We think the increase in children entitled to DLA is due to a combination of factors, including an increased number of children identified as disabled and families struggling financially due to the cost of living and so seeking to maximise income.
“On top of that there is better awareness of DLA, reduced stigma in claiming and better resources to help families claim. Despite all this, Contact estimates the benefit is still underclaimed.”
Income boost for families struggling with the cost of living
There have been large rises in children identified with a disability or additional need in recent years, due to better identification and medical advances. Government figures show that there are almost 1.5 million pupils in England with a special educational need or disability. The figure for the whole of the UK will be higher.
Not all will be eligible for DLA, but some will be – and these are currently missing out on a potential income boost of £24.45 to £156.90 each week.
“It can make a real difference to a family’s overall income and other outcomes such as reducing isolation. Many families describe getting an award of DLA as life changing as it gives them choices.”
What our DLA month is all about
During this We Love DLA month, Contact will be highlighting all the amazing resources we have to help families claim DLA. We know that it’s not an easy process, but we have videos, parent guides, Facebook Q&As and lots more to help you.
We’ll also be busting top myths about DLA – such as the myth that a child needs a diagnosis to claim DLA, which is just not true.
And later this month we will be asking you what you use your child’s DLA for, so please join in the conversation and let us know!
Resources to help you claim DLA
Contact has a host of resources to help families claim DLA for their child:
Visit our DLA webpage to learn more about this essential benefit;
For help with completing the DLA form, take a look at our top tips webpage which provide both general advice and detailed tips on each section of the form. Make sure to watch Derek’s expert advice videos as you scroll down the page too;
Watch our DLA Higher Rate Mobility webinar for even more in-depth advice on the eligibility criteria for this component and how best to explain your child’s needs;
Many disabled young people can still qualify for Universal Credit if they establish a ‘limited capability for work’ before starting their education course — a time-consuming process that we recommend starting on when your child turns 16.
Because these regulations can be quite difficult to navigate, our Family Finance adviser Derek Sinclair recently hosted a Facebook Live Q&A where parent carers could ask questions and get advice on their children’s Universal Credit claims.
The one-hour Q&A session was incredibly popular. Derek answered over 100 questions from parents who were grateful to receive expert advice on such a complex subject, and almost 3,000 people have watched the livestream since it took place.
This is a great opportunity to better understand the rules and what your disabled child could do to prepare ahead in order to facilitate a quicker Universal Credit claim in the future.
It’s also packed with brilliant advice and tips based on other parents’ shared concerns, which we believe many families will find helpful and relevant to their situation.
Last week, our SEN team hosted a special Q&A session in our Facebook Group so that parent carers in England could ask questions and get expert advice on school exclusion.
Parent carers, many with children who had been recently excluded from school, asked a range of questions about their child’s rights to education support and how to challenge decisions. Others were concerned that their child’s EHC plan wasn’t being followed, leading to behaviour issues and regular suspensions.
We were pleased to be able to offer much-needed advice to the parents who attended, but we know that exclusion is still a top concern for many of our families. So to help those who couldn’t join the Q&A, we’ve rounded up 5 top questions asked during the session below.
1. My son was repeatedly excluded due to behaviour issues related to his communication needs. The council claims he was just on a reduced timetable, but we never agreed to one. Without getting the support in his EHC plan, I’m worried this will continue to happen. What can I do?
From what you say, it sounds to me that the school has been unofficially excluding your son by asking you to keep him at home. This is unlawful. The government’s statutory exclusion guidance states on page 15 that: “An informal or unofficial exclusion, such as sending a pupil home ‘to cool off’, is unlawful when it does not follow the formal school exclusion process and regardless of whether it occurs with the agreement of parents.”
Children should also not be put on indefinite part-time timetables, though they can be allowed as a temporary measure – for example if a child needs gradual reintegration after illness. The government’s attendance guidance states on page 18 that: “All pupils of compulsory school age are entitled to a full-time education. In very exceptional circumstances, where it is in a pupil’s best interests, there may be a need for a temporary part-time timetable to meet their individual needs […] A part-time timetable should not be used to manage a pupil’s behaviour. […] A part-time timetable must only be in place for the shortest time necessary and not be treated as a long-term solution.”
As your son has not been formally excluded, you can’t use the statutory procedures for challenging an exclusion. However, you can make a formal complaint to the school as they have not followed the guidance on unofficial exclusion or part-time timetables.
You can also make a complaint to the local authority that your son is not getting the provision on his EHC plan. The LA has a legal duty under section 42 of the Children and Families Act 2014 to secure special education provision, and to ensure that the provision in section F of the EHC plan is made. This did not happen. You could also argue that the LA gave the school advice that is in contradiction to the statutory guidance on part-time timetables.
If you complain to the LA but feel you are getting nowhere with their complaints procedure, you can take things further to the Local Government and Social Care Ombudsman.
2. My son tried self-regulating in a quiet space but school staff moved him elsewhere using Team Teach. This causes him to feel threatened and react aggressively, so he has been excluded 3 times. They are threatening to exclude him again if he is violent. Are they allowed to do this?
The school should be willing to make adjustments to ensure that the likelihood of your son being excluded again is reduced. So, if being touched is a trigger for him and may cause him to react, the staff should stop touching him and find a different approach.
You would expect this to have been discussed at a reintegration meeting. These meetings should be held on the day when a child returns to school after being excluded to discuss what went wrong and what support or adjustments may need to be put in place.
During the first 5 days of an exclusion, the school should take reasonable steps to set and mark work for your child. For longer exclusions, the school must arrange suitable full-time alternative education to begin from the 6th day of the exclusion. However, it is good practice for a school to provide work for exclusions that last 1-5 days too.
Also, if your son has an EHC plan, an exclusion – or the threat of one – should trigger an emergency review of the plan. The local authority must make sure that any alternative provision is able to meet your child’s special educational needs as set out in the EHC plan.
You could consider applying to other places if your son’s school is unable to meet his needs. However, a school can refuse to accept a child if they have been permanently excluded twice already within the last two years, and in some circumstances they can refuse pupils with challenging behaviour. Our website has more information on behaviour-based exclusion and the school’s statutory responsibilities.
3. My 17-year-old was suspended for assaulting his teacher. The school and local authority have called an emergency review of his EHC plan while they seek alternative provision for him. How much of a say do I have in all this?
In theory, if your son is suspended for a fixed term, he should be allowed to return to school when that period has expired. However, I imagine that if you insisted on this, the school would permanently exclude him as it is a serious breach of the behaviour policy and having him in school is likely to affect the welfare and safety of others.
The school is doing exactly the right thing in calling an emergency review rather than going straight for permanent exclusion. I suggest you should argue that the current school is not suitable for your son and cannot meet his needs. The EHC plan should be brought up to date and a new draft prepared. You can then ask for a different school or college. Our website has information about how the process of naming a school works. We also have information on annual reviews of EHC plans which you may find helpful.
Bear in mind that this may take a bit of time. If you can get everyone to agree that the current school is unsuitable and it is not in your son’s interests to return, then the local authority becomes responsible for arranging alternative provision (AP) until a new school or college can be named. The AP must be suitable for your son’s special educational needs. It is not unreasonable for you to be allowed to express a preference. If the local authority does suggest something that is unsuitable and you do not send your son, you cannot be fined as he is over compulsory school age.
4. My child was sent to a pupil referral unit with a view to return to school after one term, but he’s now been there for a year. His needs have increased and I don’t think he will be able to cope in a mainstream school anymore. What can I do?
Schools can direct pupils to off-site education for the purpose of improving a child’s behaviour, but you are correct in saying that this should be temporary. The placement should also be reviewed regularly. It may be helpful to read the section about off-site direction on page 20 of the government’s statutory exclusion guidance.
As you now have a draft EHC plan, you can express a preference either for the primary school where he is on roll, or for another school – mainstream or special. This would be the best way to get him out of the PRU and into a school that can meet his needs. It would probably be helpful for you to read our online information on draft EHC plans.
You can also take a look at our webpage on school placements for more information about your rights when asking for a school to be named on an EHC plan.
5. My son was permanently excluded in November, but a panel overturned this decision. He’s currently in a pupil referral unit and awaiting an EHC assessment, but the local authority is pressuring us to remove him from the roll. What are my options?
I am so sorry to hear your son was permanently excluded, but I’m glad the unfairness was recognised.
The school should not be pressuring you to remove your son from the roll. The governing body must consider both the interests and circumstances of your son, other pupils, and staff when considering reinstating a child. A reinstatement meeting should happen as soon as possible to discuss whether your son could return to school and what the school may need in order to better meet his needs (for example, top-up funding).
If the school would struggle to meet his needs full-time, it may be possible for him to attend both the school and the PRU with an individualised timetable. This can be an option until the EHC process is complete and a suitable setting that he can attend full-time is identified.
Unpaid carers – including parent carers – are providing more hours of care now than they were 10 years ago.
That’s according to the latest census data by the Office for National Statistics (ONS) about unpaid carers released last week. The census happensevery 10 years and gives a picture of all the people and households in England and Wales, including the number of unpaid carers and those living with a disability of health condition.
The Census 2021 reveals there are more people providing 20-49 hours of unpaid care each week compared to 2011. There has also been a slight increase in the number of people providing 50 or more weekly hours of unpaid care.
And there are now more unpaid carers who are aged between 29-49 than those aged 50-64, dispelling the myth that carers are always older people.
Support services cut back
Una Summerson, Head of Policy and Campaigns at Contact, said: “Parent carers will not be surprised by this data, which confirms what they have experienced over the last 10 years – support services being cut back, so they are left to do more, often complex, care in the home themselves.
“Many of the families we support are not only caring for their disabled child: they also have elderly parents, who need help and support. And reduced support services – respite care, physiotherapy, occupational and speech and language therapy, as well as mental health services – means they are providing more care and are less able to combine work and caring.”
Growing number of children with additional needs and increased elderly population
Surprisingly, the census results showed that the overall number of unpaid carers has reduced in the last 10 years. It had been widely expected to show an increase due to rising numbers of children with special educational needs and disability (SEND), as well as a rapidly growing elderly population.
In England alone, now there are just under 1.5 million pupils with SEND – an increase of 77,000 in a year – due to advances in medicine and better awareness and identification of additional needs.
Una added: “Many parents don’t identify themselves as unpaid carers because they are looking after their son or daughter. There is a lot of work to do in helping people recognise themselves as carers, so that they can tap into help available.”
In its analysis, the ONS also suggested that the unexpected drop in the overall number of unpaid carers could be attributed to wording differences between the 2011 and 2021 census questions, as well as to the impact of the Covid-19 pandemic on household mixing, reduced travel and higher death rates in the elderly population.
Caring More Than Most
Following the last census, Contact commissioned the University of Leeds to analyse the data relating to families with disabled children.
Our subsequent report, Caring More Than Most, highlighted the unacceptable difference in the quality of life and opportunities available compared to other carers and families unaffected by disability.
Help available for parent carers
Carers need and deserve better financial support. We want the government to increase the rate and earnings threshold of Carer’s Allowance to allow more parents to work without losing this important benefit. Take part in our Carer’s Allowance campaign.
Too many children in England are still waiting for a suitable school place, despite it being two weeks into the second term of the school year.
Some children are in school while on a waiting list for something more suitable. Others are not in school as they wait for a school place that can meet their needs.
Parent carers like Robert Martin, who co-chairs the Leicestershire Parent Carer Forum SEND Hub, were forced to give up their careers to look after their children at home because no suitable education options were available locally.
Our Head of Policy and Campaigns, Una Summerson, was interviewed on the radio about the fact that, sadly, this is not an isolated case.
“We hear from many parents who are unable to secure a school place or have to go through a lengthy battle, perhaps going through tribunal to get the right school place for their child,” Una said. “This puts unnecessary extra pressure on families that are already dealing with all sorts of additional pressures in their lives.”
More funding needed to release pressure on specialist school places
Una said: “Without support in place some children with SEND start school refusing, some are put on part-time timetables, are excluded, or develop emotional and mental difficulties.
“As a result, more families are looking to specialist school places, leading to increased pressure. There must be more money put into the SEND system by government to address these issues. We understand that local authorities have been facing unprecedented financial challenges for many years now. But we must do better for disabled children. We would like to see greater accountability for councils who do not meet their legal duties to provide an education for all children.”
Sadly, one of the symptoms of not getting appropriate support is a child might be at risk of suspension or exclusion from school.
That’s why tomorrow we are running a special Facebook Q&A session for families in England with our SEN team at 10am. Join our Facebook group to take part.
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 19 January
That’s why we are running a special Q&A about school exclusions in England on Thursday 19 January, 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 19 January, 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 be a video livestream.
Can’t make it on 19 January?
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.
Following survey findings that 90% of practices aren’t accepting new adult patients, the committee wants to know how to address inequalities in dental access.
What we’ll be telling the inquiry
We know from our research that good dental care can make a real difference to families with disabled children and prevent long-term problems escalating. And the consequences of poor care for children with existing conditions and health issues can be serious.
Unfortunately, families with disabled children often face multiple barriers to accessing good dental care. Finding information about and getting a referral to specialist dental care can be difficult. The lack of home visits for children with complex needs is a problem. And parents have told us that vital services like community dentists are increasingly scarce.
Dr Martin Samuels is a consultant respiratory paediatrician at Great Ormond Street Hospital who also works at University Hospitals of North Midlands NHS Trust.
Dr Samuels spent more than an hour answering parent carers’ questions during the Q&A session, which focused on what to do if your disabled child catches flu or is sick with chest infections.
In it, he warned that flu alone is making a lot of children very, very ill this winter:
While the vaccine may not stop them getting other viruses or bacterial infections, there’s some evidence that if you child has flu immunisation it reduces the risk for Group A Strep ‘kicking in’ afterwards.
Dr Martin Samuels
The risks of Strep A
Dr Samuels said disabled children are not necessarily more at risk of catching Group A Strep. But some children who struggle to clear their airways have low muscle tone, and these children could be susceptible to getting sicker from the bacterial infection.
It is common for Group A Strep to cause chest infections like bronchitis. But in more serious cases, it can also cause meningitis, brain abscesses and bone infections.
Dr Samuels added: “Viruses like flu make you more prone to bacterial infections like Group A Strep. They cause inflammation in the body, and Group A Strep can get in and cause more significant infections.”
He strongly recommended that all children between two and 16 should have the flu vaccination, and that it needs to be done every single year because the strains change annually.
Other topics covered in the session
Dr Samuels answered parents’ questions on everything from administering antibiotics and vitamin supplements to caring for tube-fed children with chest infections.
Key topics covered in the Facebook Live Q&A included:
Spotting the signs of Group A Strep infection.
Knowing when to seek medical advice.
Tips for clearing your child’s blocked nose and easing coughs.
When to send your child back to school safely.
Giving antibiotic pills to your child when liquid suspensions are unavailable.
Caring for children with immune deficiencies who get a chest infection.
How to improve a child’s immunity.
The effects of cold air and exercise on breathing.
More than 2,300 parents have so far watched our Facebook Live Q&A, with many viewers commenting that Dr Samuels’ advice throughout the session was incredibly helpful.
“Thank you so much for this session, I feel much better and less anxious about sending my son to school. Much appreciated.”
Last month, our SEN advisers hosted a special Q&A session in our Facebook Group in which they helped nearly 20 parent carers who were worried about their child’s school attendance.
Parents asked a variety of questions ranging from support with medical absences to threats of exclusion and even legal action as a result of low attendance – a reflection of how stressful this issue can be for many families.
We have rounded up 5 top questions that we think other parent carers will find helpful, but you can read them all in Contact’s Facebook Group.
Can I take my child on holiday during term time if they struggle with crowds and find busy attractions too overwhelming?
Unfortunately, there isn’t any special provision for taking children with additional needs on holiday during term time. The law changed a few years ago, making it much harder for schools to authorise those absences. This is entirely at the headteacher’s discretion. Headteachers can authorise a term-time holiday in exceptional circumstances only and parents must ask permission in advance. There’s a bit more detail about this in the government’s attendance guidance on page 58. Some schools are sympathetic and will authorise the holiday, while others won’t. If your child’s school or the local authority has a blanket policy saying they never authorise term-time holidays, you may want to challenge that on the grounds of potential discrimination. But that wouldn’t necessarily mean that your child’s absence would be authorised. Some parents bite the bullet and pay the fine, but that’s not an option for everyone, particularly as each parent can be fined for each child.
My daughter’s special school keeps closing down whole classes due to understaffing, but complaints are falling on deaf ears. What can I do?
I don’t think there’s a quick and easy answer to this one, as many schools are being faced with increased costs and also have particular difficulty recruiting support staff as the pay is low. But I can suggest a few possible ways forward.
Write formal complaints to the governing body of the school and then escalate. If the school is a local authority community school, you can take it further to the local authority and the secretary of state; if it’s an Academy, then to the Academy Trust and the Education and Skills Funding Council. We have some further information on complaints on our website.
State that your daughter is entitled to full-time suitable education. The education she is getting is not full-time, and neither is it suitable as children with Education, Health and Care (EHC) plans are far less likely to be able to learn remotely than other children. Your daughter also will not be able to get the full provision specified on the EHC plan.
Local authorities have a duty under section 19 of the Education Act 1996 to provide alternative education for children who are not able to be in school for reasons of illness, exclusions or otherwise. They also have a duty under section 42 of the Children and Families Act 2014 to secure the provision in the EHC plan. You can complain to the local authority if they are in breach of either of these.
I would also suggest getting together with other parents and asking for a meeting with the Director of Children’s Services in your local authority. It would be helpful to get the local MP involved too.
My child’s school sent me a letter saying the welfare officer is monitoring her poor attendance, despite knowing about her issues with social anxiety and possible autism diagnosis. What could come of this?
It is possible that the school has a system that automatically sends out letters when a child’s attendance falls below 90% (the threshold for persistent absence).
If you don’t already have it, ask for a copy of your child’s attendance record. Check whether the absences have been authorised or not. Absences for sickness and medical appointments should be authorised. You cannot be fined or prosecuted for authorised absences. Our absence from school webpage has more information on this.
Regarding fines, each local authority must publish a local Code of Conduct for education penalty notices. This sets out the circumstances in which a fine will be issued, for example over an unauthorised term-time holiday or a set number of unauthorised absences per term. Some local authorities are much quicker to move to fines than others.
It may be helpful to contact the attendance officer yourself and explain the situation. This will also show that you are trying to work with the school.
What can I do when my child’s school is marking them down as ill, but the local authority is threatening legal action over non-attendance?
You must try and get medical evidence, as you should not get in trouble for non-attendance if you have supporting evidence from a professional. If the child is too unwell to attend school and the school are marking it as an authorised absence due to illness, the local authority should not be threatening legal action. Visit our website for more information about medical-related absences.
Each local authority must publish a local Code of Conduct for education penalty notices. This sets out the circumstances in which a fine will be issued, for example over an unauthorised term-time holiday or a set number of unauthorised absences per term. Some local authorities are much quicker to move to fines than others.
There is no formal right of appeal against a fixed penalty notice for school attendance. But if you are issued with a fixed penalty notice and you think that the notice has been issued in error (for example if the absence was authorised or should have been authorised), then you can ask for the penalty notice to be withdrawn.
What do you do when a child has been permanently excluded but there is no next school in place?
During the first five days of an exclusion, the school should take reasonable steps to set and mark work for your child. From the sixth day, the local authority must arrange suitable alternative education for your child. This may be in a pupil referral unit. In the longer term, the local authority should find a place in another school for your child. You can also apply to other schools yourself. However, a school can refuse to accept a child if they have been permanently excluded twice already within the last two years, and in some circumstances they can refuse pupils with challenging behaviour.
If your child has an Education Health and Care (EHC) plan, an exclusion should trigger an emergency review of the plan. The local authority must make sure that any alternative provision is able to meet your child’s special educational needs as set out in the EHC plan.
Our webpage on exclusions has a table which sets out your rights and the governors’ responsibilities according to the length of an exclusion.
Our helpline advisers ran a busy Q&A session in our Facebook group last week for families who were new to the social care assessment process in England.
They answered nearly 30 questions from parent carers about both Carer’s Assessments and Needs Assessments, all of which are available to read in our private Facebook group for parent carers.
Below are 5 of the most popular questions asked during the Q&A – but you can also visit our social care webpages or read our Services & Support guide for more detailed advice and downloadable template letters to help you request a social care assessment for yourself or your child.
1. Our local authority said they don’t offer Carer’s Assessments. Is this allowed?
All parent carers and young carers in the UK have strengthened legal rights to request a Carer’s Assessment under the Children and Families Act 2014. Additionally, the assessment should be carried out if it appears to the authority that the parent carer may have needs for support. Take a look at our Carer’s Assessment factsheet for more information on what the law says.
Unfortunately, it is quite common for families to hear statements like: “We don’t do carer’s assessments in this local authority.” But these statements are unlawful, and you should have good grounds for a complaint. We have advice about how to make a complaint on our website and from page 39 of our Services & Support guide.
Some local authorities also tell parents that there’s no need for a separate assessment, as their child’s assessment already took their needs as a carer into account. Whilst the needs assessment for a disabled child should be ‘holistic’ by taking into account the needs of carers and other family members, you still have the legal right to a separate Carer’s Assessment which focuses specifically on you. The assessment should consider the impact caring has on your wellbeing and other aspects of your life, such as work and relationships.
2. My autistic daughter was refused an assessment because she doesn’t have learning difficulties. I complained, but nothing happened. Are they within their rights?
If your child is disabled and in need of services, you can’t legally be refused an assessment. Social service departments have a general duty under Section 17 (10) of the Children Act 1989 to safeguard and promote the interests of ‘children in need,’ and to promote their upbringing by their families. The law recognises disabled children as being in need. See page 7 of our Services & Support guide for information on how the law defines who is a disabled child.
Unfortunately, we have heard before about local authorities who say they will not assess the needs of a child with a specific condition. This is incorrect. In fact, you don’t even need to have a diagnosis for your child to get an assessment or help from social services.
You mentioned that you have already made a complaint. Make sure that you have gone through all stages of the local authority’s own complaints process, which outline in detail on page 39 of our Services & Support guide. Once a complaint has been through the local authority’s review panel, if you are not happy with the panel’s decision then there are various other options – such as taking the issue up with your MP or complaining to the Local Government and Social Care Ombudsman.
3. My son’s needs were assessed based on a safeguarding toolkit. I believe his disabilities were downplayed. What can I do about an insufficient assessment?
The starting point of an assessment should always be your child’s needs, regardless of whether services exist to meet them. The Working Together to Safeguard Children guidance emphasises the importance of the assessment being both child-centred and family-centred. The approach should consider the needs of the whole family and those of the wider community. So, as well as your child’s disability and health needs, social services should also consider other aspects of your child’s life, such as education and religious or cultural needs. On page 17 of our Services & Support guide, we explain the ‘Assessment Framework’ that all local authorities must follow during an assessment. This is a detailed framework which is included in the government’s statutory guidance.
If you believe the assessment was insufficient or disagree with how eligibility and assessment criteria were applied, you can complain to the children’s social services team. For advice on the complaints process, take a look at page 39 of our Services & Support guide or visit our webpage on making a complaint.
4. Is it true that a Carer’s Assessment might not lead to support? If so, how can I make the most of it?
While local authorities must legally carry out a Carer’s Assessment if a parent carer in the UK requests one, it unfortunately may not always result in increased levels of support. However, it is a chance to tell social services what could make looking after your child easier for you. Though it may not always result in extra help, without this assessment a carer would not have an opportunity to explain what would make supporting their disabled child a more positive experience for them and their wellbeing.
To prepare for the assessment, we suggest thinking about how you are coping with caring and about how your caring role affects your day-to-day life. For example, your child might not sleep well at night and you may be finding it difficult to cope with this. Think about how your caring role affects your wellbeing, mental and physical health, relationships, employment, education, leisure or interests. During the assessment, give as much detail as you can about these things to help ensure your family gets the support you need. We have more information in our Carer’s Assessments factsheet and from page 20 of our Services & Support guide.
After social services have carried out an assessment, they may decide there is no need for services, which could result in your case being closed with no further action taken. If you disagree with this decision, you can challenge it using the local authority’s complaints procedure.
5. How much detail should be included in a Needs Assessment?
The needs assessment must paint an accurate and detailed picture of your child’s and your family’s needs. Take a look at government guidance which sets out (from page 27) what constitutes a good assessment and what social workers must take into consideration.
If you’re not happy about some of the information in the assessment, or about any information that has been omitted from the assessment, you can give feedback to children’s services about this. You can ask that the assessment be edited or request that any information you think is relevant should be included. You can also make a formal complaint about any aspect of the assessment.
This month our Family Finance Team ran another busy Q&A session about how to claim the higher rate mobility (HRM) component of Disability Living Allowance (DLA) for children with autism spectrum conditions or learning disabilities.
1. I have just applied for HRM for my six-year-old daughter, and I asked my local shoe shop to evidence what they saw when we were in. Are ‘witness statements’ like this taken into account?
Supportive evidence doesn’t always have to be provided by professionals. Ultimately, anyone who knows your child well and who has a detailed knowledge of the difficulties that you face out of doors can be asked to provide written evidence in support.
The more information that you can provide about your child’s mobility needs, the better. Families will often provide supportive evidence from professionals who are involved with their child. It’s not normally enough for a professional to simply confirm that your child has a particular condition.
In order to be useful, any letters or reports from professionals will also need to describe the difficulties your child has in getting around out of doors. School or nursery reports can be common alongside letters of support from health professionals such as doctors, nurses, health visitors or therapists. Some families may also have a social worker or social care staff helping them support their child.
2. I was told that my son won’t qualify for HRM on the grounds of ‘severe mental impairment’ because he only needs to be restrained at home. He masks quite well at school, but outside it’s horrendous. I don’t feel this is fair. How can I sort this out?
One of the tests to qualify for HRM on the grounds of severe mental impairment is that the need for physical restraint must be ‘regular’. In another case, a Judge found that in order to be classed as ‘regular’ restraint must be needed not only when out of doors but also at least some of the time in-doors. If your child needs restraint at home as well as outside – even if not normally at school – there may still be a case to argue.
However, there have been disagreements in case law about the relevance of a highly structured school environment in applying these tests. The rules are extremely complex, so I would recommend that you call our free helpline on 0808 808 3555 (open Mon-Fri 9.30am-5pm) to discuss this in more detail with a member of our Family Finance Team.
3. How should my child’s school word their supporting letter for our DLA application? I have heard of applications being rejected because assessors focused on particular words, such as ‘chooses to’.
Unfortunately, there is no standard form of wording that is likely to lead to a more successful outcome. Ultimately, any information that is provided in support of an HRM award would need to be specific to that child’s individual behaviours and needs – and these can vary hugely from child to child.
In relation to cases where a family are arguing for HRM on the grounds of refusal episodes, it’s not uncommon for the DLA Unit to refuse on the basis that they believe that a child is able to walk and is making a conscious decision not to walk, i.e. that they won’t walk rather than can’t walk.
However, it’s often possible to argue that any refusal episodes result from your child’s behaviour problems and are intricately bound up with the symptoms of their condition. Where a child is not in control of their behaviours or their response to these, it’s possible to argue that they can’t accurately be described as a child who is merely choosing not to walk.
Children may often have a raft of symptoms that are relevant to their ability to walk but which may make them not wish to walk – including sensory issues, clumsiness and lack of coordination, high levels of anxiety and fearfulness, poor balance, muscle weakness, tiredness, lack of endurance, breathlessness, and embarrassment. If you can show that your child has symptoms of this type and as a result has frequent episodes where their ability to walk is interrupted – and that these episodes are sustained and not easily overcome by coaxing or the promise of treats – you should have a good case to argue that these episodes are not due to your child being wilful or naughty, but rather that they are symptoms of his condition over which they have no control. You will need to explain to the DLA Unit the types of refusal episodes that you face, how frequent they are, the difficulties you face in overcoming them in trying to get your child to walk, and the symptoms that you think are causing these behaviours.
4. Is there an assessment that can be done, such as an IQ test, to prove your child is severely mentally impaired (SMI)? I only have reports from my son’s special school and his paediatrician, but neither cover all the points needed to qualify on the grounds of SMI.
A ‘severe impairment of intelligence’ is generally taken to be an IQ of 55 or less. However, while IQ is a starting point, this is not the only measure of impaired intelligence. If a child’s IQ is above 55, or it is difficult to measure their IQ test, the decision-maker at the DWP must consider other evidence. For example, children who have autism spectrum disorders may do well in intelligence tests but may find it very difficult to use their intelligence in everyday situations, such as using the road safely.
So even if a child has an IQ of more than 55, it may still be possible to show that they have a severe impairment of intelligence if you can establish that they have difficulty applying their intelligence in the real world. The DWP must consider, for instance: does the child have the ability to make sound judgements? Do they have insight, i.e. the ability to discern the true nature of a situation? Do they have sagacity, i.e. the ability to reason and deliberate, to evaluate information before making a decision? In one Upper Tribunal case, it was accepted that a child with no sense of danger ‘lacks such a fundamental aspect of basic intelligence’ that his intelligence must be severely impaired.
So alongside gathering evidence from your child’s school or nursery about any cognitive difficulties they have in comparison to their peers, information about issues such as lack of insight and awareness of common dangers will also be very useful.
5. I want to re-apply for DLA for my son, who gets lower rate mobility. He isn’t physically impaired, but he needs a lot of support and supervision. It’s more of a psychological issue than a physical one. How could he qualify for HRM?
There are two ways that a child with challenging behaviour can qualify for HRM.
The first is on the grounds that they are effectively ‘virtually unable to walk’ as a result of temporary interruptions in their ability to walk – what are often referred to refusal episodes. For example, they might have frequent episodes where they will refuse to make any progress on foot, perhaps throwing themselves on the ground or going limp. Children with autism spectrum disorders also often have refusal episodes where they refuse to either leave the house or go where parents want them to, or will refuse to go any further while they are out.
The ‘interruptions’ must be part of a physical disability or have a physical cause, rather than being under conscious control. DLA case law has accepted that autism spectrum disorders are physical disorders of brain development, and that some children with learning disabilities may have ‘interrupted’ walking because of a physical cause such as brain damage, or a chromosome or genetic disorder (such as Down syndrome).
The problem is that there are no hard and fast rules about how frequent these episodes must be in order to meet this test. Ultimately, a decision-maker will need to look at the individual case and see if they feel that these episodes are happening with enough regularity that the child can fairly be described as virtually unable to walk.
The second way of qualifying is on the basis of ‘severe mental impairment’ (SMI). This is only open to those who get the highest rate of the DLA care component, but that is just one of the five tests they must meet in order to qualify. You must also show that they have ‘a state of arrested development or an incomplete physical development of the brain’ (for example, an autism spectrum disorder); that they have a ‘severe impairment of intelligence and social functioning’; and that they exhibit very unpredictable behaviour which is extreme and disruptive.
Their chances of getting this benefit on the grounds of SMI will depend on the challenging behaviours they have and whether they meet all of the five tests set out in our factsheet. For example, you would need to show that his behaviours are disruptive and extreme and that he requires regular restraint to avoid a risk of danger to himself and others and that he is so unpredictable that the whole time he is awake (i.e. not just out of doors but also at home and at school/nursery) he needs someone to be there watching over him.
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