We’re looking for as many parents, carers, practitioners and supporters as possible to fill in our short survey to tell us what you think about Contact and how we come across.
We want to improve the way we communicate the work we do here at Contact, so people better understand what we offer families and people who work with disabled children and their families.
What you tell us will play a vital role in this and help us shape the way we communicate with parents, carers, supporters, professionals and other audiences.
Photograph: ASU Department of English/Creative Commons
More than 2,000 families in England responded to our survey on SEN support last month.
This shows the importance of the topic. SEN Support is also one of the top issues on our helpline. Thank you to all who completed the survey, we will share the results very soon.
We are taking the topic of SEN support to parliament.
Ben Maguire MP is hosting a meeting on Tuesday 13 May in Parliament.
This meeting will give parents the opportunity to speak about their experiences of SEN support and what changes are needed to ensure access to an inclusive education for all children.
We’ve set up a pre-written email so you can quickly and easily ask your MP to join the meeting in Parliament.
It is important that we get as many MPs to attend this meeting as possible so that they can hear from families and understand how the current SEN system can be improved and why it is so very important to do so.
We questioned over 300 parents in our bi-annual information and advice services survey. We run the survey to ensure our support services are meeting needs and to hear your feedback on what we can do to improve them.
After using our information and advice services:
95% felt better informed about how to get support.
88% felt more confident.
87% knew what their next step would be.
97% would recommend the service to others.
We also received some positive feedback:
“Contact is my go-to service to find any information regarding help for our neurodiverse 4 year old grandson.”
“Information given and the help received always correct and financially you have helped my family.”
“I have learnt everything !!! The difference this service makes has no words to describe it!!!”
“Really helpful and tried so hard to help me.”
“Accessing Contact has been a lifeline… Contact has saved my sanity.”
And we also heard some suggestions for reaching more families, including:
This month new rights for parents with babies receiving neonatal care have rolled out in England, Scotland and Wales.
Since 6 April, working parents of babies admitted to neonatal care are entitled to up to 12 weeks’ leave in addition to their maternity and paternity leave.
How does it work?
Employees are eligible if their baby enters neonatal care within 28 days of birth for a continuous seven days or longer.
Parents must use the leave within 68 weeks of birth and take leave in blocks of a week.
New right to neonatal pay
Some working parents are also entitled to neonatal pay.
Depending on length of service and earnings, some employees are eligible for up to 12 weeks’ neonatal pay of £125 a week.
Find out more
You can find out more about neonatal care leave and pay, including full eligibility criteria, on the website of the national charity Working Families. The charity Bliss supports parents of babies born premature or sick.
This morning the first 750 primary schools in England launched their free breakfast clubs as part of a national trial that runs until July.
Thousands of parents across nine regions will benefit from half an hour of free childcare before school each day. From July, breakfast clubs are expected to rollout across the country.
The government committed to funding free breakfast clubs in its manifesto, arguing that the offer will improve attendance and academic performance.
Contact urges lords to ensure clubs are accessible
We think the provision of universal free breakfast clubs is a positive step towards supporting children’s wellbeing. But we still think the bill does not sufficiently ensure that these clubs will be accessible to children with special educational needs and disabilities (SEND).
Today, the Disabled Children’s Partnership (DCP) is hosting a schools event in the House of Lords, where the Children’s Wellbeing and Schools Bill, which sets out breakfast clubs provision, is currently being debated. Our policy officer Imogen Steele is speaking at the event about the need to make the clubs inclusive.
Research from Contact and the DCP found that a third of eligible disabled children were already missing out on free school meals to which they were entitled. Barriers disabled children face include specific dietary requirements, lack of transport to get to school, and lack of specialist support staff at meal times.
We are recommending amendments to the Bill to strengthen the breakfast club provisions. This includes:
A clear requirement for schools to make reasonable adjustments so disabled children can benefit from provision, including providing specialist staff.
Duties on local authorities to co-operate with schools in delivering their duties, including ensuring home to school transport they provide allows attendance at breakfast clubs.
It can be daunting to think about how your loved one will be supported after your death.
If you or a family member are considering leaving money directly to a disabled person, you are likely to impact their entitlement to means-tested benefits and social care support. It may also leave them at risk of financial abuse.
Contact is partnering with Renaissance Legal to offer a free 1 hour webinar about planning for the future of a disabled loved one.
Date: Wednesday 21 May 2025
Time: 10 – 11am
Location: Online (a Zoom link will be sent when you book a place).
Renaissance Legal’s leading and trusted expert Philip Warford will explain how to safeguard means-tested benefits and how to provide financial security for your disabled loved one as well as the rest of the family.
The webinar will cover:
The importance of writing a Will and Letter of Wishes.
Protecting means tested benefits and support packages through trusts.
This is the biggest increase in the earnings limit since Carer’s Allowance was first introduced back in 1976. Contact has long campaigned for future increases in the National Living Wage to be tied to the earnings limit. This will now happen.
This increase will guarantee that anyone working 16 hours or less at National Living Wage is eligible for Carer’s Allowance or Carer Support Payment. They must still meet the other caring rules to qualify.
Follow the linked pages above for more information about how earnings are calculated and the other rules that you need to meet to qualify for Carer’s Allowance or the Carer Support Payment.
Annual uprating in benefits rates
This week also sees the start of the annual uprating of benefit payment rates.
Working age benefits are increasing by 1.7%. For example, the middle rate of Disability Living Allowance (DLA) care component will increase from £72.65 to £73.90 per week. The higher rate care component will increase from £108.55 to £110.40 per week.
The amount of Carer’s Allowance paid also increases from £81.90 to £83.30 per week.
Delay in higher payments starting for Universal Credit claimants
The increase in benefit rates does apply to Universal Credit. However, because of its monthly assessment period, there will be a delay before you see any increase in your Universal Credit payments.
The increase applies from the end of the first assessment period starting after 7 April. This means most Universal Credit claimants won’t see any increase until their May payment. Some will have to wait until early June.
No increase in the amount of Universal Credit received for those with transitional protection
If you get a transitional element in your Universal Credit award, the overall amount of Universal Credit you get is unlikely to increase at all.
This is because the transitional element you get is reduced by any increase in your other Universal Credit payments. This includes where an increase is due to the annual uprating in benefits rates.
Example
Alice is a lone parent whose Universal Credit includes a transitional element of £200 per month. Because of the annual uprating in benefits, her Universal Credit payments – such as her standard allowance, child element, carer element and disabled child addition – are all going to be uprated.
In Alice’s case, these increase by a combined amount of £18.37 per month. This results in £18.37 being deducted from her transitional element, reducing it from £200 to 181.63 per.
We’re looking for parents and carers who know about Contact and have used one or more of our of our services such as our helpline, parent workshops, family events, website or social media, to join one of two online focus groups taking place in April to tell us what you think about what we do and how we come across.
Whether you are relatively new to Contact or have been using our services for years, we’d like to hear from you.
We are currently taking a good look at Contact’s brand and want to make it better so more families know about us and how we can help them overcome the daily challenges they face. As someone who has already found Contact, your help to get this right will be invaluable. With your help we’ll be able to make sure that we’re using the right messages and make it easier for other parent carers to find us and know that they can turn to us if they need support.
We’re looking for 10 parent carers to join each online focus group which will take about 1 hour 15 minutes. You will only need to join one focus group. Both focus groups will take place on Wednesday 23 April at either 10:30-11:4:5 am or 1-2:15pm.
If you think you can help we’d love to hear from you! Please fill in this form with your details so we can ensure we get a good cross section of people for each focus group planned.
If you are selected to take part either of the two focus groups we are running, your name, email or phone number will be shared with the agency who will be conducting the focus groups on Contact’s behalf. The agency are called Criteria. We will not share any information about your child or family with them.
In consideration of your valuable time and to make sure no one who wants to participate is prevented from taking part because of financial constraints, we are able to offer the people who are selected to take part in the focus group a small financial incentive which will be paid after the focus group has taken place.
Disability benefit changes, squeezed education, health and social care support for children with additional needs. Add to this a liberal sprinkling of parent blame, and it’s no surprise so many parents we speak to feel like they’re being attacked from all directions.
At Contact, we believe that parents deserve to be heard on the critical issues that affect your every day. Sadly and far too often, the parent’s perspective is overlooked.
That’s why we’re launching Your Voice – a new feature on our website that amplifies the voices of parents like you.
Through Your Voice, we’ll provide parents with a platform to respond to current hot topics from their own lived experience. Together, we can make sure parent’s concerns are front and centre in the ongoing conversations that shape support for children with additional needs.
Laura’s voice on lack of mainstream school support
Our first Your Voice features Laura responding to the Channel 4 News item on Sunday about children who need more help at school, but aren’t getting it.
Laura’s son Aiden is eight and autistic, with sensory modulation disorder and selective mutism. Laura shares her views on why putting SEN support on a legal footing matters:
“Despite his needs, it has been a struggle to get Aiden much support in school. For example, he is supposed to have access to a short sensory break in school every day (despite how he may be feeling at that time). But this doesn’t always happen. Or staff rely on Aiden to ask for it, which he cannot always communicate, hence needing it to just be a part of his routine.
“Aiden masks a lot in school to try and ‘fit in’, which can be extremely tiring for him. He then comes home from school dysregulated and anxious. His school often tell us they don’t always have the staff available to allow him sensory breaks outside if needed.
“I feel like I’m being passed from one service to another, with nothing done or one service disagreeing with another. I am told school have access to certain services. Then, when I speak with school, they will inform me this isn’t the case. As I am not a professional, I can only go by information given to me by the various services/school.
“Applying for an EHC plan is a long process – my son is really struggling right now.”
“I’m now contemplating applying for an EHC plan to try and legally secure the support that he so clearly needs. But this is a long process and my son is really struggling right now. If Aiden had access to the support suggested by the professionals as part of his school routine, I feel he would come home from school a happier and more relaxed child. If the school had access to more funding, this could make a huge difference.
“Aiden will be starting secondary school in just over two years time. I feel like an EHC plan is the only route I can go down to ensure that he will get what he needs in secondary school where his communication difficulties will be even greater.”
SEN support is help available in schools to children who have SEN but don’t have an EHC plan. It includes help such as small group support, adult help during break and lunchtimes and speech and language support.
Lack of support leads to avoidance and exclusions
As a result of mainstream schools being unable to meet all of a pupil’s needs through SEN support:
20% of schools had asked for an EHC plan.
35% of parents had asked for an EHC plan.
The impact on pupils of not getting any or enough SEN support includes:
33% of children with SEN are receiving emotional SEN support including feeling fans and class exit cards.
Just 9% are getting speech, language and communication support. This was the least commonly available, despite research showing that speech and language is critical to a child’s development and wellbeing
Over a third of respondents (35%) said that funding was the reason schools gave for not providing adequate SEN support.
A fifth of children with special educational needs are not getting SEN support.
We ran the survey with the charity IPSEA. Both Contact and IPSEA provide helplines. Both have seen large increases in calls from families whose children aren’t getting the right support in school.
Contact & IPSEA call for statutory footing for SEN Support
Anna Bird, Chief Executive of Contact, spoke on Channel 4 News alongside parent carer Lauren and her son Alex.
Anna said:
“The government says it wants more children to feel supported and included at mainstream school. It’s important that we get that right. Our survey shows that the mainstream offer is currently not working for children, families or schools. This means too many children with SEN are being failed, missing school and parents forced out of paid work to deal with the fall out.
“We are calling for SEN support to be made a stronger part of a school’s duties. We believe this will ensure more children are able to enjoy and take full part in school without going through a legal process to get an EHC plan.”
Madeleine Cassidy, Chief Executive of IPSEA, commented:
“The findings from this survey reinforce what we hear at IPSEA from families every day. The lack of enforceability of SEN support means too many children struggle to get adequate support in mainstream schools. The sharp rise in EHC plans we see year-on-year also reflects the reality that, for many families, an EHC plan is the only route to securing the support their child needs.
If SEN support were placed on a statutory footing – applying across early years, mainstream schools and further education settings – fewer families would need to go through the legal process of obtaining an EHC plan simply to get the right support for their child.”
Taking the results to parliament
Contact is organising an event in parliament to give parents the opportunity to speak about their experiences of SEN support and what changes are needed. The meeting will be hosted by Ben Maguire, MP for North Cornwall.
Ben Maguire MP, said: “The findings of this survey highlight the urgent need for properly funded and effective SEN support in schools. It is deeply concerning that 21% of children with identified needs receive no support at all, leaving families struggling to access the help their children desperately need.
“The lack of adequate SEN support in schools is driving requests for EHC plans, as parents and schools seek formal assessments to secure the support children should already be receiving. Without the right SEN provision in place, we see higher rates of school absence, avoidance, and exclusions, meaning too many children are being left behind.
“Investing in early intervention, properly trained staff, and better-resourced schools will not only improve outcomes for children with SEN but will also reduce costly crisis interventions and the growing reliance on EHCPs. No parent should have to fight for their child’s right to an education. The Government must act now to deliver a system that works for every child, every family, and every school.”
The Chancellor Rachel Reeves set out further cuts to benefits today, as part of the government’s Spring Statement. These cuts will affect some families with disabled children.
All Universal Credit claimaints will see a reduction in the amount of the standard allowance by the year 29/30.
If a parent has their own disability and receives the Limited Capability for Work (LCWRA) or health element, this will either be:
Frozen until 2029-30 if they are an existing claimant.
Reduced by almost half and then frozen until 2029-30 if they claim it after April 2026.
There hasn’t been any changes announced to the carer element itself, but those claimants will see their basic element reduced.
Anna Bird, Chief Executive of Contact, said:
“Today is another financial blow to families with disabled young people, still reeling from the savage disability benefit cuts announced last week. The reductions and freezes announced today will be felt most acutely by families who can’t seek paid work due to their caring responsibilities. We are talking about lone and disabled parents who are already at much greater risk of living in poverty.
“This contradicts the statement made in the government’s Green Paper Pathways to Work, published last week, that the basic rate of Universal Credit needs to rise in line with inflation to prevent hardship.”
Keir has rare genetic condition GABRB3 and needs round-the-clock care. But the family only get four hours of support through social care. Despite council tax rises coming in April, very little of that goes into support for disabled children and their families.
Anna Bird, Chief Executive of Contact says:
“We are hearing from more and more families whose children have very complex health needs requiring round-the-clock care, who are getting very little, if any, support from social care. Some are rejected by NHS funded care. But social care also push them away, so they are left with nothing, despite very clear need.
“We know council tax is set to rise in most areas at the beginning of April. While some of that goes into children’s social care, the majority goes to privatised children’s care homes and to children’s safeguarding. So there is very little left for families caring for a critically ill and disabled child at home.
“The recent report by Lord Darzi for the NHS plan shows that there has been a 205% increase in the number of children living with life-limiting conditions. But our research shows that local authorities are not tracking these numbers to help them plan for their care or the support for their families. It is a gross failure in their legal duty. And it helps to explain why parents talk about the battle to get help for their child, whether that’s a personal budget, a short break or overnight care.
“That’s why we support the Law Commission’s proposals to improve the law around disabled children’s social care. Families like Becci’s don’t want special treatment they want a fairer, more accessible, system of social care that delivers support when they need it.”
Parent carers! Please help spread the word about our life-changing services for families by inviting your child’s primary school or nursery to take part in DinoDay, our annual awareness and fundraising event
It takes just 1 minute — we’ve written some text that you can quickly copy & paste into an email on our DinoDay webpage.
DinoDay is Contact’s annual event on 19 June to raise awareness of disability and to help fund our vital advice and support services. Find out more about DinoDay.
Schools can join the fun by hosting exciting activities to raise awareness of disability in the classroom, as well as encouraging donations through sponsored events.
Simply invite your child’s school or nursery using the template text on our webpage, and we’ll take care of the rest!
Once they register their interest, we’ll send them everything they need to get involved — such as fun games and activities, inclusive educational exercises for the classroom, information about Contact, and helpful disability resources.
However, we wanted to try to answer some of the most pressing questions parents have. Full details of the government’s plans are not yet available, so our answers are based on the information currently available.
In this article
Do these reforms apply UK-wide?
All of the proposed changes apply to families in England and Wales.
Northern Ireland has its own social security system. Although this tends to broadly mirror the rules in England and Wales, there are some differences. So as yet it is not clear whether we will see similar changes in Northern Ireland.
Changes to PIP rules
The government intends to change the PIP rules to make it harder for some groups of disabled people to qualify for the daily living component. This component is based on your child’s ability to carry out key activities necessary to participate in daily life.
As well as scoring the necessary number of points to qualify (8 points for the standard rate; 12 for the enhanced rate), there will be an extra test. You will need to score at least four points in any one PIP daily living activity.
Example: Someone who scores two points in five different PIP activities has a total of 10 points. Currently, they will qualify for the standard rate of the daily living component. Under the new rules, they will not qualify for the component. This is because they have not scored at least four points in a single activity.
Someone who scores four points in two separate PIP daily living activities and has a total of eight points would still qualify for the daily living component of PIP.
Your questions
When is this change to PIP rules expected to come in?
The government is proposing changing the PIP daily living component rules from April 2026.
The government is not consulting on this change. Instead is will be bringing forward legislation for parliament to debate.
My child is already on PIP and gets the standard rate for daily living. Are they at risk of losing their PIP daily living award?
The Green Paper says that the change in PIP rules will not only apply to new claimants. It will also apply to existing claimants when their award comes to be reassessed.
This means that some existing claimants will lose their entitlement to PIP daily living component if they fail to score at least four points in at least one daily living activity when they come to be re-assessed. This could affect both people on the standard rate or enhanced rate who do not score at least four points in any one activity.
Will this affect my other benefits?
Losing entitlement to PIP daily living component will also have an impact on other benefits. For example, a carer may stop being eligible for Carer’s Allowance or the carer element of Universal Credit. They may start to become treated as a job-seeker rather than a carer under Universal credit rules.
Changes to the limited capability for work and work-related activity element of Universal Credit
When a disabled adult is claiming Universal Credit, they can qualify for an extra Universal Credit payment. This is the limited capability for work and work-related activity element (LCWRA). It is for people who, because of health problems, are not only unfit to work but also unfit to undertake any work-related activity.
The LCWRA element is currently an extra £95.78 per week (£416.19 per month).
The government is proposing a number of changes to this extra Universal Credit payment. It wants to:
Freeze the LCWRA element rate for existing claimants for three years – between 2026 and 2029/30. This means the payment will not increase with inflation during that period. All Universal Claimants getting a LCWRA element will be worse off in real terms, taking into account inflation.
Cut the LCWRA rate from £97 to £50 per week for people who qualify for the element after April 2026. (Update: The Chancellor announced in her Spring Statement on 26 March 2025 that this rate will be frozen until 2029-30).
Introduce a new disability payment in Universal Credit to compensate those who qualify for the new lower rate of LCWRA. This will only apply if they have “the most severe, life-long health problems who have no prospect of improvement and will never be able to work”.
Scrapping the work capability assessment. Entitlement to the LCWRA element (re-branded the health element) will be solely based on whether that disabled person qualifies for PIP. See more below.
The government is not consulting on these changes, but parliament may need to agree on them.
Your questions
My disabled daughter already gets Universal Credit. This includes an extra amount because she has a LCWRA. Will her payments be reduced?
No, the amount of Universal Credit she receives will not go down. This is because she has established an entitlement to the LCWRA element before April 2026.
However, the amount of the LCWRA element she gets will be frozen between April 2026 and 2029/30. This is effectively a cut in real terms, taking into account inflation. Normally the amount would increase each year, but that will not be happening between 2026-29.
My son gets Universal Credit that includes a LCWRA element. What happens if they put him back through another reassessment after April 2026? Will his payment be cut under the new rules?
No, he won’t go onto the lower rate of £50. This will be the case so long as the Department for Work and Pensions (DWP) continue to accept he still has a LCWRA under any new reassessments.
I’ve heard that disabled people who first qualify for an LCWRA element after April 2026 will get less money. Is that correct?
Yes. Where someone first establishes an entitlement to LCWRA element after April 2026, the extra amount they get will only be £50 per week (£216 per month), rather than £97 per week (£416 per month).
The government argues that this is part of “rebalancing payments” within Universal Credit. It’s true that the standard allowance for all Universal Credit claimants will increase by £7 per week. But that is dwarfed by the huge cut in the LCWRA element for new claimants.
I thought there was going to be protection for severely-disabled people?
The Green Paper does say that some severely disabled adults affected by this cut will be able to get a new disability element of Universal Credit to help protect them from this loss.
However, this extra payment will only apply if your child is considered to have “the most severe, life-long health conditions, who has no prospect of improvement and will never be able to work”. The Green Paper does not provide any information about who is likely to fall into this group. Nor does it say how much this new extra disability payment will be.
The situation is more complicated for young disabled people under 22 years of age. See below.
Preventing payment of the limited capability for work and work-related activity (LCWRA) element to young people aged under 21.
The government will consult on a proposal to delay access to the LCWRA element until someone is 22.
Under the current rules, it’s possible for a young disabled adult to claim Universal Credit with a LCWRA element from age 16. This is so long as they are not “receiving education“. Where a young person on Universal Credit qualifies for LCWRA, their award includes a LCWRA element regardless of their age.
However, the proposal is that from 2027/28 onwards, disabled young people who qualify for Universal Credit will only receive the standard allowance. They will not get the LCWRA/health element until they reach the age of 22. This would mean payments of only £311.68 per month until they reached the age of 22, rather than the £727.87 per month currently payable.
Your questions
Will this change apply to 16-21 year olds who are already on Universal Credit with a LCWRA element?
If the government pushes ahead, they do not expect this proposal to come into force until earliest April 2027.
At the moment, it’s unclear whether it will only apply to new claims made after that date. Or whether the restriction will apply to 16-21 year olds already on Universal Credit before that date.
I’ve heard that the government expects most young people aged under 22 to be in education, work or training. Does this include disabled young people?
The government has set out a Youth Guarantee in their Get Britain Working White Paper. This expects virtually all young people aged under 22 “to be engaging with work or training-related activity.”
This would include those getting an additional Universal Credit payment due to their health problems, where continued learning or other forms of meaningful activity would improve their longer-term employment prospects.”
Won’t there be any special rules for disabled 16-21 years so disabled they cannot realistically take part in work or training?
Paragraph 259 of the Green Paper says as part of their consultation, the government will “consider what special provisions need to be put in place for those young people where engagement with the guarantee is not a realistic prospect.”.
So it looks like there may be some protection. However, there is no information about how any protection would work or what the qualifying conditions would be.
Other questions
Is it true that my child will be able to keep claiming DLA until they are 18?
The government will consult on whether to raise the age young people can claim PIP from 16 to 18. This would mean that young people can keep their claim for DLA for longer.
This change is already in place in Scotland. There, young people can choose when to start their claim for Adult Disability Payment from the age of 16 up to age 18.
This change would mean less pressure on young people to make benefit claims as an adult. It is a change that Contact has campaigned for and would support. If the government agree to make this change, we do not yet know when it would happen.
The government says that it will be scrapping the work capability assessment. If that medical assessment disappears, how will they decide which disabled people are eligible for higher payments?
The government will scrap the work capability assessment from 2028/29. It is not consulting on this change.
Instead, whether someone qualifies for any extra financial support in Universal Credit due to health conditions will be solely based on whether or not they get PIP. If they get PIP, they will automatically qualify for an extra health element as part of their Universal Credit. This will be renamed the health element, rather than the limited capability for work-related activity (LCWRA) element. If a disabled person does not qualify for PIP, they will not be eligible for the extra health payment.
This may be good news for disabled people on PIP. They who will no longer have to go through two different assessments. Instead, their PIP assessment will determine whether they get extra Universal Credit payments due to health reasons alongside their PIP.
However, some disabled people not getting PIP are currently accepted as having a LCWRA. This group will lose out under these plans. People who lose their PIP because of planned changes in the PIP daily living criteria are also likely to lose their Universal Credit health payments too.
My disabled child is 18 and in education. He has made a ‘credits only’ claim for new-style ESA to help him get Universal Credit as a student in the future. Will there be changes in the Universal Credit rules for students?
Once the work capability assessment is scrapped, the rules governing which students are able to get Universal Credit will have to change too. However, at this point of time, no information is available on what these new rules would be.
Any changes to the rules are unlikely to happen until 2028. In the meantime, we expect the current Universal Credit rules for young people receiving education to continue.
Doesn’t the DWP use the work capability assessment to decide whether someone on Universal Credit should have to look for work or take part in training? How will the DWP decide what conditions to apply to disabled people on Universal Credit if it scraps the work capability assessment?
This is correct. The DWP uses the work capability assessment to determine how much money a disabled person gets under Universal Credit. But it also has a second function. The DWP use it to decide whether someone should be exempt from having to job-seek or take part in other work-related activities as a condition of getting Universal Credit.
By scrapping the assessment, there will need to be other means to decide whether someone is exempt from job-seeking or other work-related activities. As part of the Green Paper, the government will consult on which groups of disabled people should be exempt. This means that more disabled people will be expected to engage with DWP staff in “support conversations”. These are about agreeing a pathway towards moving towards work and other work-related activities.
Does this mean that in the future some disabled people who have a LCWRA will be at risk of sanctions if they don’t or can’t do what Universal Credit ask them to?
Potentially yes, but it is too early to tell how likely that is. The green paper states at point 247:
“There will be the ultimate backstop of sanctions to underpin the expectations of engagement, but this should be used only as a last resort. Our priority will always be to reengage people with appropriate support and work together to overcome any barriers or issues that individuals will face in meeting requirements, and we will build in safeguards to ensure vulnerable people are properly protected.”
I’ve heard that the government is scrapping contributory Employment and Support Allowance (ESA). How will this impact on my disabled 20 year old?
It is very unusual for a disabled young person to be getting contributory ESA. So the chances are this won’t affect your child. This is because most disabled young people won’t have worked and paid the national insurance contributions necessary to qualify.
However, there will be disabled parents who may be getting contributory ESA for themselves. The proposals will affect them. The government is consulting on a plan to replace contributory ESA with a new Unemployment Insurance benefit. However, unlike contributory ESA, which can be paid indefinitely for people who have a LCWRA, this new benefit will be time-limited.
Low-income parents who lose contributory ESA may be able to get Universal Credit instead. But some disabled parents with other income or capital will lose out.
It’s Neurodiversity Week (17-23 March) and we wanted to share some new research we have published with partners the North-West Network of Parent Carer Forums (NW NNPCF), Alder Hey Children’s Hospital and Edge Hill University, about what stops some disabled and neurodiverse people from underrepresented communities accessing healthcare.
We already know that neurodivergent and/or disabled children and their families have less access to healthcare services as well as poorer health and life expectancy. The research team, funded by the National Institute for Health and Care Research, talked with neurodivergent young people and their families in the North-West of England to find out more about what they find difficult about accessing healthcare and what could be done to improve it.
Neurodivergent and disabled young people said that they felt health professionals did not always treat them with dignity and respect and that they often felt treated as ‘less than human’.
“Staff who care and understand, some are good, some try their best and others treat me as less than ‘normal.”
“I just get too nervous to talk to the doctor, the thought of the language that they use, it’s too difficult.“
Communication with health professionals could also be difficult with many of the health professionals they came in contact with often lacking an understanding of neurodiversity and disability. Often, they felt rushed and not listened to at medical appointments and unable to ask questions. They often didn’t understand the complicated language used by health professionals and felt they couldn’t tell professionals the best way to communicate with them. And they also told researchers that health care environments were often noisy, smelly, brightly lit and very noisy and making it extremely challenging for people who have sensory processing differences.
Mary Mulvey Oates from Contact says: “This research marks an important first step in finding out more about what stops people in some communities from getting the health services and care they need and are entitled to – and what can be done to help reduce these barriers. Young people and parent carers said they often felt judged, dismissed and discriminated against, due to a lack of understanding about their culture and language. As a result, often interactions with health services were avoided because of the anxiety and trauma it can cause.”
Reasonable adjustments can make a big difference
Sometimes it’s simple changes and reasonable adjustments that can make a real difference. Suggestions from the group of young neurodivergent people included ensuring health professionals have training to improve how they care and communicate with them, for example by using simple language and resources to help understanding.
Other suggestions from young neurodivergent people to make health care more accessible included: • More flexible ways to book appointments with health services such as by text, online or via livechat • Less rushed appointments • More sensory friendly GP surgeries, hospitals and other healthcare settings
The research team also heard from Gypsy, Roma and Irish Traveller heritage, Asylum Seekers and Refugee communities about the significant challenges they face accessing health services for their disabled child, and co-produced suggestions to help reduce these inequalities.
Mary Mulvey Oates continues: “This project has discovered important priorities for neurodivergent and/or disabled children and their parents from under-served communities. We hope that we can continue to work with communities to drive further research and service change.”
All four partnership organisations working on this research were given special recognition by NHS England last month for this pioneering project aimed at improving healthcare access for disabled and/or neurodivergent children in under-represented communities.
Read the findings from all community groups in this project
Earlier today, the government launched its Green Paper on disability reform “Pathways to Work”, setting out plans to cut spending on disability benefits by around £5 billion.
What plans does the Green Paper set out?
The Green Paper is wide-ranging. It includes plans to:
Scrap the work capability assessment. Any extra financial support for health conditions in Universal Credit will instead be solely based on whether that disabled person qualifies for Personal Independence Payment (PIP).
Change the PIP rules to make it harder for some groups of disabled people to qualify for the daily living component. In addition to scoring sufficient points (i.e. eight points), claimants will need to meet an additional test of scoring at least four points in any one daily living activity.
Increase the standard personal allowance paid under Universal Credit by £7 per week by 2026/27. (Update: The Chancellor announced in her Spring Statement on 26 March 2025 a below-inflation rise in April 2029 to £106 per week.)
Cut the health payment (i.e. the current limited capability for work related activity component) by £47 per week for new claimants from £97 to £50. (Update: The Chancellor announced in her Spring Statement on 26 March 2025 that this rate will be frozen until 2029-30. It has already been announced that the LCWRA element will be frozen for existing claimants until 2029-30).
Introduce a new disability payment into Universal Credit from 2026 for those on the new lower rate of the health payment, but only where they are someone who has “the most severe, life-long health conditions, who have no prospect of improvement and will never be able to work”.
Freeze the rate at which the limited capability for work related activity element is paid for existing claimants until 2029/30.
Introduce a work trial guarantee. This will mean that no one’s disability benefits will be reassessed as a direct result of them moving into work.
Increase the number of face-to-face rather than telephone PIP assessments.
Provide significant additional support to help disabled people move into work.
Implications for Carer’s Allowance claimants
The proposed changes will make it harder to qualify for the PIP daily living component. So inevitably it will lead to fewer carers qualifying for Carer’s Allowance.
This is because to get Carer’s Allowance, you must be looking after someone who is on a “qualifying disability benefit”. If you are looking after a disabled person aged 16-state pension age in England, then the relevant “qualifying disability benefit” is PIP daily living component. If a carer cannot get Carer’s Allowance or the carer element of Universal Credit, they will then potentially lose entitlement to Universal Credit altogether or be expected to claim as a jobseeker.
Extending DLA to 18 could delay this for a bit for some families. Given PIP is sometimes harder to qualify for, it would be in a lot of families’ interests if their child can stay on DLA for longer.
Green Paper announces further consultations
The Green Paper also consults on proposals to :
Prevent young people from being able to access an additional health element within their Universal Credit until they reach the age of 22.
Allow Disability Living Allowance (DLA) to continue to the age of 18 rather than 16. We welcome this consultation, which is something Contact has campaigned on and families want.
Scrap contributory Employment and Support Allowance (and contribution-based Job Seeker’s Allowance). Replace it with a new time-limited Unemployment Insurance contributory benefit.
Who do these changes affect?
The focus on the Green Paper is mainly on benefits for disabled adults. DLA is unaffected other than proposals to increase the upper age limit to 18.
However, families with young disabled adults getting PIP or Universal Credit will be very concerned about how the Green Paper will impact on their disabled son or daughter.
What is Contact’s view?
Responding to the Green Paper, Anna Bird, Contact CEO, says:
“The cuts to disability benefits announced by the government today are worse than we feared. These significant changes will undoubtedly have a devastating impact on many of the families we support who are already experiencing poverty and struggling to pay for the basics – heating, housing, disability aids and therapies.
“The safety net for families with disabled young adults was already seriously strained and now feels like it has been ripped away.”
Derek Sinclair from Contact’s Family Finance Team says:
“The proposed changes to PIP criteria will undoubtedly see many vulnerable young disabled people lose entitlement to this crucial benefit. Added to this, swingeing cuts to the limited capability for work related activity component for new claimants will see many more families with a disabled young person forced into poverty in the future.
“We are also particularly worried about proposals to limit this extra health-related Universal Credit payment to young people aged 22 and above.”
We’re relaunching our podcast with a few pilot episodes, featuring interviews and guest contributions and diving deeper into the issues we know families care about.
Helping your disabled child move onto secondary school
Our first episode is all about helping your disabled child move onto secondary school.
We speak to Caroline Klage, brain injury solicitor and parent to three neurodiverse children, who shares her strategies and top tips for preparing for the move.
You can also find our podcast episodes on our Youtube channel, or listen below.
Moving on up
Caroline, a guest in our latest podcast episode, has also written a blog for us on her strategies for preparing for the move to the next stage of your child’s education.
From this April, the earnings limit for Carer’s Allowance and the Carer Support Payment in Scotland will be increasing to £196 per week, the largest increase in the earnings limit since the benefit began. As a result, it may become possible for some carers to qualify whose earnings were too high in the past.
However, the Carer’s Allowance rules can be confusing to understand. That’s why we are inviting you to ask our parent advisers any questions you may have about this important benefit at a special Q&A session focusing on Carers Allowance, the Scottish Carer Support Payment and the carer element of Universal Credit.
If you want to know more about whether you qualify for one of these carers benefits or how they interact with one another – you can put your questions to our team on 20th March when they’ll be waiting to answer your questions.
Can’t make Thursday 20th?
We have lots of information about Carers Allowance and other benefits for carers in our benefits section.
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