This is why Contact – as part of the Disabled Children’s Partnership (DCP) – are calling for MPs from every party to join us at a parliamentary drop-in event on Tuesday 15th July to represent disabled children and families in their constituencies. The event will give MPs the opportunity to hear directly from young people, parents from the Let Us Learn Too campaign and representatives from the DCP .
Disabled young people from across the country will be present to share their experiences of school and college.
Can you invite your MP to the event so disabled children and families in your area have a voice?
In the second reading of the Universal Credit and Personal Independence Payment Bill on Tuesday, the government made further last minute concessions to get the bill through. The Bill will now go forward for a third reading in Parliament.
Changes the government made to the Bill included removing altogether its proposed changes to Personal Independence Payment (PIP) rules. While this will come as a relief to many families, the Bill still includes plans to cut Universal Credit payments for many new claimants.
Below, we explain what impact families can expect the Bill to have.
What did the government remove from the Bill?
The government had planned to introduce a new “4 point rule” to the daily living component of PIP for new claimants. It has now scrapped this proposal – at least for the time being.
Instead, the government will carry out a wide-ranging review of PIP assessments before deciding what changes to make. It has committed to do this in collaboration with disabled people.
This review is not expected to finish until Autumn 2026. We will not know how PIP may change until after that.
What changes to Universal Credit are still going ahead?
The Bill still includes proposals to cut the amount of the Universal Credit health element (also known as the limited capability for work and work-related activity element or LCWRA element) for many new claimants. This change will come in from April 2026.
For some new claimants, this payment will be cut from £423 to £217 per month. This lower payment is also being frozen and will not increase with inflation for a four-year period.
Who will be protected from cuts to the Universal Credit health element?
The cuts will not affect disabled people who before 6 April 2026 have a Universal Credit award that includes an entitlement to the health element.
New claimants will also be protected if they either are terminally ill or meet severe conditions criteria. Claimants in these protected groups will continue to receive a health element of £423.27. This will increase with inflation as normal.
However, any new claimants who are not terminally ill and who do not meet the severe conditions criteria will receive a much lower health element payment of £217.26 per month. This payment will not increase with inflation between tax years 2026/27 and 2029/30.
Which new claimants are likely to meet the severe conditions criteria?
In order to fall under the severe conditions criteria, a new claimant needs to both:
Be assessed as having a limited capability for work and work-related activity (LCWRA)
And meet the following extra tests:
They have been diagnosed by an appropriately qualified healthcare professional in the course of the provision of NHS services.
Their condition will last for the rest of their life.
There is no realistic prospect of recovery of function.
Their level of function must mean they would “constantly” meet the tests to be treated as having LCWRA “on all occasions on which the claimant undertakes or attempts to undertake an activity.”
At this point in time, it‘s difficult to know exactly how Department for Work and Pensions (DWP) decision-makers interpreted this. But new claimants at risk of receiving lower payments will include anyone with a condition that could improve over time and many with fluctuating conditions.
What about the government’s proposal to scrap the Universal Credit health element for under 22s?
The cuts to the Universal Credit health element set out in the Bill will apply to new claimants who do not meet the severe conditions criteria, regardless of their age.
However, there is also a possibility that the government could scrap the Universal Credit health element altogether for under 22s. Whether this is likely to happen is not clear yet. This proposal to scrap the health element for under 22s is not part of the Bill currently going through Parliament.
Instead, the government is consulting on it separately. Responses to that consultation only closed on 30th June. It is likely to be weeks, if not months, before it becomes clear whether the government intends to proceed with this or scrap its proposal to target under 22s.
We’re delighted to have over 200 nominations for our Contact Awards 2025 so far! Thank you to everyone who has nominated in one of our six award categories this year so far.
Over the next few weeks, we’ll be focusing on each award category.
This week its our Proudest Moment category
This award is all about recognising the challenges your disabled child has overcome that fill you with pride and make you smile.
Jane said: “My disabled child is now 34. She has a job as a midday supervisor at a local special school, and she absolutely loves her role there.”
And Marzena shared: “My son’s achievement was finding his voice by not accepting everything. He is non-verbal with limited communication, but he stopped accepting any colour of bowl and now chooses by pointing to the one he wants. To some, it’s just a bowl, but for us, it’s the beginning of him finding his voice. I’m so proud of him for being himself.”
We’re sure you don’t really need any inspiration and have so many moments in which your child has made you proud to be their parent, grandparent, sibling or friend.
So now is your chance to give your child some extra recognition.
The changes announced should ensure that the welfare reforms in the Bill will not impact existing claimants. However, future claimants will still be affected, and many will see much lower financial support.
The main ‘concessions’ announced are below.
Personal Independence Payment
The new 4 point rule in the Personal Independence Payment (PIP) daily living component will apply from November 2026 to “new claims only”. This means that anyone who claims PIP before 26 November won’t be subject to the 4 point rule.
It also seems likely that the 4 point rule won’t apply to existing claimants who have a PIP review or renewal after that date. However, as yet the government has not made this 100% clear.
But the 4 point rule will still apply to all new PIP claims made from November 2026. This includes existing child DLA claimants who will turn 16 and move onto PIP from DLA at some point after 26 October.
In her letter to Labour MPs, Liz Kendal, Minister for Work and Pensions, has also said that the government intends to bring forward a review of PIP assessments. This will be “co-produced with disabled people and the organisations that represent them”.
The government will also bring forward a package of measures to support disabled people into work.
The Universal Credit limited capability for work and work-related activity (LCWRA) element
The government has abandoned its plans to freeze payments of the Universal Credit LCWRA element – also known as the health element – for existing claimants.
Instead, existing claimants will qualify for a payment of £423.27 per month, which will increase each year with inflation. This will also apply to any new claimants who meet severe conditions criteria.
However, for Universal Credit claimants who first qualify for the LCWRA element after 6 April 2026 and who do not meet severe conditions criteria, the government plans to go ahead with its proposal to cut the LCWRA element to £217.26 per month. The government will then freeze this rate for four years.
The government is also still actively considering scrapping the LCWRA element altogether for young disabled people aged under 22. This proposal is being considered under a Green Paper consultation, which is quite separate to the Bill going through Parliament.
Contact’s reponse to these concessions
Derek Sinclair, senior adviser in Contact’s Family Finance Team, said:
“Last week’s announcements will be a relief to existing claimants. However, it does nothing to help future claimants, including disabled children not currently old enough to claim adult disability benefits.
“We face being left with an unfair two-tier system. Future claimants will find it harder to qualify for financial support, and the benefits paid to many will be substantially lower.
“The government should scrap its current plans until it has first carried out a proper consultation with disabled people and their carers.”
The main change, which we’re also campaigning against, is to limit payments of the Universal Credit health element to adults aged 22 and over. If you are limited for time, we urge you to answer question 11 on this topic.
Anna Bird, Chief Executive at Contact and Madeleine Cassidy, Chief Executive at IPSEA said: “It’s unsurprising that there has been a rise in the number of EHC plans because it is currently the only reliable way to secure support in school for a child with special educational needs. The latest data shows the system needs rapid intervention, but getting rid of EHCPs is not the answer. Education, Health and Care (EHC) plans are a vital part of the SEND system and must be protected. They provide legally enforceable rights to support for children and young people, and we are clear that the Government’s forthcoming White Paper must not erode these legal rights. But making SEN support a stronger part of a schools’ duties will ensure more children can take part in school without necessarily first going through the legal process of getting an EHC plan.
“If we strengthen the offer of SEN support – such as brain breaks and some forms of smaller group work, support at playtime and speech and language therapy – some children may not require an EHC plan to get the support they need. It would also begin to restore families’ confidence in the education system. While this approach will require investment in resources and training, research shows this early intervention produces cost savings further down the line, as well as being the best option for children, who shouldn’t have to fail at school before they receive the support they need.
“What we’re proposing is simple and achievable. Contact and IPSEA have drafted an amendment to the Children and Families Act that could make a meaningful difference right now. If the government aims to make mainstream education more inclusive, the first step must be strengthening the legal duties around SEN support.”
The government has announced plans for all newborns in England to undergo whole genome sequencing within the next 10 years, as part of a £650 million investment into DNA technology and personalised healthcare.
This marks a significant shift in the way rare and genetic conditions are identified. And it could be life-changing for thousands of families across the UK.
What is whole genome sequencing and what difference will it make?
Currently, the NHS newborn screening programme tests for just nine conditions using a heel-prick blood test.
However, there are over 7,000 known rare genetic conditions, many of which go undetected for years. For families of children with rare, undiagnosed conditions, the diagnostic journey can be long, traumatic, and isolating.
Whole genome sequencing has the potential to screen for hundreds of conditions at birth. This will enable earlier diagnoses, faster access to treatment, and more targeted support.
This is a huge step forward for families living with rare conditions. Too often, families tell us they’ve had to fight for years to get answers. Earlier diagnosis means fewer invasive tests, less uncertainty, and more time to plan for the future.
Health Secretary Wes Streeting described the programme as a key part of a shift in the NHS towards predicting and preventing illness, rather than waiting to treat it.
“Genomics presents us with the opportunity to leapfrog disease, so we’re in front of it rather than reacting to it,” he told the Telegraph.
Contact’s view – programme must come alongside genetic counselling
Contact welcomes this investment. But we also urge policymakers to ensure the rollout is ethical, equitable, and accompanied by clear support pathways for families who may receive unexpected or complex results.
As this rolls out, genetic counselling must play a central role. Receiving unexpected or complex genetic results can be emotionally overwhelming for families, especially when conditions have uncertain outcomes or no current treatments. Genetic counsellors provide critical support. They can help families understand what the results mean, explore options, and make informed decisions about care and next steps. Without this support, families risk being left confused, distressed, or facing life-changing news without the guidance they need.
For this programme to truly benefit families, they need fully-funded genetic counselling that’s widely available and integrated from the very start. Genome sequencing can offer hope, but it also comes with emotional and practical challenges. Families must not be left to navigate this alone.
Next steps
We’ll be watching developments closely to ensure that the development and delivery of this plan fully involves families of disabled and medically-complex children.
Nominations are coming in thick and fast for our Contact Awards 2025. Thank you to everyone who has nominated in one of our six award categories this year so far.
Over the next few weeks, we’ll be focusing on each award category.
This week its our Friendship First category
This is a new category for us. We know how important friendship is as part of the support network of parents caring for a disabled child. So we’ve introduced this category to acknowledge the friend who’s made your life better, just by being in it.
Do you have a friend that’s there when you need them and doesn’t judge?
Or is there someone in your life who knows just when to say the right thing, sticks by you through difficult times, and is there to celebrate you and your child’s achievements?
Nominate them today and tell us all about why they are such a special friend.
Friendship first in one of six categories you can nominate people for. The others are:
Parent Carer Award
We want to hear about you or someone you know and the amazing things they do to make sure their disabled child and family can take part in everyday life.
Change Maker Award
Nominate an individual, family or a group of parents who have campaigned or worked together to make life better for other families with disabled children in their community.
Proudest Moment Award
Big or small, this is your opportunity to tell us about the challenges your disabled child has overcome that fill you with pride and makes you smile.
Friendship First Award
Tell us how your friend makes your life better as a parent carer just by being in it.
Grandparent Award
Your opportunity to tell us about all the wonderful and everyday things grandparents do for your family.
Sibling Award
Tell us about the often unseen but great things siblings do for their disabled brothers and sisters or that help make mum and dad’s lives just that little bit easier.
The Contact Weekly Lottery is turning 5, but you’re the one getting a present!
We’re giving away 5 free entries to celebrate our lottery’s fifth birthday. This means you’ll have 5 extra chances to bag one of our cash prizes, including our amazing £10,000 jackpot – all while helping families with disabled children flourish.
Simply sign up by Friday 31 July and we’ll add 5 free entries to your first draw once we receive your first direct debit payment.
Entries cost just £1 a week, and your ticket will help fund Contact’s life-saving advice and support services that families of children with additional needs rely on.
And if you think you don’t stand a chance, think again… Just last month, we had the pleasure of telling parent carer Kimberley that she had won £1,000. She joined our lottery to give back to families like hers, and now she’ll get to treat her three SEND boys to a much-deserved holiday with her winnings.
Emma’s story wasn’t much different: as a mum of two autistic sons, little did she know that her generosity in wanting to help families like hers through our lottery would turn into a huge £10,000 jackpot!
Kimberley and Emma are just two of hundreds of parent carers who have won big in the Contact Weekly Lottery.
By joining the Contact Weekly Lottery, you’ll help us make a difference to the thousands of families who turn to us each year for the vital advice and support they need to give their disabled children the best chances in life.
Among the proposals the government is seeking views on is cutting Universal Credit healthcare payments for under 22s. We’re campaigning against this change.
Also in the consultation are plans to raise the age at which children move from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) from 16 to 18. This would apply to the age at which new claimants are able to apply for PIP, too. The government says it wants to align adult disability benefits with other support that becomes available at 18. It also wants to ease the pressure on young people of going through PIP assessments.
Thanks to those who took part in our Facebook poll, sharing what you thought should happen. Overwhelmingly, most of you agreed with the government’s proposal to raise the age of PIP eligibility to 18.
Contact’s view on raising PIP eligibility to 18
Contact will be responding to the consultation. Our recommendation is that disabled young people moving from DLA should have the option of claiming PIP at 18 rather than 16, but only if they choose to. We believe disabled children should have the flexibility to either claim PIP at 16, or choose to delay this for up to two years.
Our view is that there is no optimum age for moving onto adult disability benefits from DLA. Every family is different. The majority of young people are eligible for higher payments under PIP than DLA and may wish to claim at 16. But research also shows that up to 13% of children on DLA fail to claim for PIP at 16. We know the process will be too challenging for some families at this age.
This is the system that applies in Scotland. Disabled children on Child Disability Payment can choose to claim Adult Disability Payment at any time from 16 up to 18. (They can even apply later, but this will result in a gap in payments). We think this system is working well.
Last year, Contact secured a three-year grant from the National Lottery Community Fund (NLCF) to launch a new project across Wales.
Called ‘Building Resilience’, it aims to reach and support families with disabled and additional needs children across the whole of Wales, especially those who haven’t connected with us before.
With two new members of staff joining us, the Contact Cymru team have been busy developing links with communities, running workshops, events and drop-ins, and finding new ways to share information and support. And we’re really pleased that as our first year comes to an end, we’ve reached and supported nearly 600 families across 19 Local Authorities!
Highlights from Year 1
We ran lots of workshops on topics like stress, anxiety, sleep, sensory needs, and money management. Some of these were online and some were in-person, including three wellbeing programmes to help parent carers cope with stress.
We partnered up with experts to run webinars on topics such as benefits, wills and trusts.
And we set up a new online drop-in service for parent carers. These take place on the first and third Thursdays of every month from 11:00-12:00 during term time, and are a welcoming and safe space to listen or talk about experiences.
We continue to support families with enquiries by email and phone.
While we’re proud of the first year, and will continue to run and build on all the services above, we know there’s still much more to do. Too many families still don’t know their rights, what support is out there, or where to turn in a crisis.
We’re already planning for the year ahead. We want to:
Reach even more families in rural and isolated areas
Make our events and information sessions even more accessible
Work with more professionals and community groups
Share family voices with those in power to push for change
We’ve got more exciting events and projects in the pipeline for Year 2, including inclusive disability sports events this summer, funded by the Albert Gubay Charitable Trust, and a large-scale event with Wrexham AFC. Watch this space!
As one parent carer told us:
“I just wish I knew earlier how important this support would be, in order to give me the strength to keep going at the times when I’ve waivered and thought I can’t keep going anymore.”
We’re so grateful to the families and organisations who’ve helped us in this first year and to the National Lottery Community Fund for their support. Diolch pawb!
Uchafbwyntiau o Flwyddyn 1 o’n rhaglen Adeiladu Gwydnwch yng Nghymru – a beth nesaf.
Y llynedd, sicrhaodd Contact grant tair blynedd gan Gronfa Gymunedol y Loteri Genedlaethol (NLCF) i lansio prosiect newydd ledled Cymru.
O’r enw ‘Adeiladu Gwydnwch’, ei nod yw cyrraedd a chefnogi teuluoedd â phlant anabl ac anghenion ychwanegol ledled Cymru gyfan, yn enwedig y rhai nad ydynt wedi cysylltu â ni o’r blaen.
Gyda dau aelod newydd o staff yn cael eu hychwanegu, mae tîm Contact Cymru wedi bod yn brysur yn datblygu cysylltiadau â chymunedau ledled Cymru, yn cynnal gweithdai, digwyddiadau a sesiynau galw heibio, ac yn dod o hyd i ffyrdd newydd o rannu gwybodaeth a chefnogaeth. Ac rydym yn falch iawn, wrth i’n blwyddyn gyntaf ddod i ben, ein bod wedi cyrraedd a chefnogi bron i 600 o deuluoedd ar draws 19 Awdurdod Lleol!
Uchafbwyntiau o Flwyddyn 1
Fe wnaethon ni gynnal llawer o weithdai ar bynciau fel straen, pryder, cwsg, anghenion synhwyraidd, a rheoli arian. Roedd rhai o’r rhain ar-lein a rhai yn bersonol, gan gynnwys tair rhaglen lles i helpu rhieni sy’n ofalwyr i ymdopi â straen.
Fe wnaethon ni gydweithio ag arbenigwyr i gynnal gweminarau ar bynciau fel budd-daliadau, ewyllysiau ac ymddiriedolaethau.
Fe wnaethon ni greu gwasanaeth cymorth ffôn newydd, yn gyfan gwbl ar gyfer gofalwyr rhieni sy’n byw yng Nghymru.
Er ein bod yn falch o’r flwyddyn gyntaf, a byddwn yn parhau i redeg ac adeiladu ar yr holl wasanaethau uchod, rydym yn gwybod bod llawer mwy i’w wneud o hyd. Mae gormod o deuluoedd yn dal i beidio â gwybod eu hawliau, pa gefnogaeth sydd ar gael, neu ble i droi mewn argyfwng.
Rydym eisoes yn cynllunio ar gyfer y flwyddyn i ddod. Rydym am:
• Cyrraedd hyd yn oed mwy o deuluoedd mewn ardaloedd gwledig ac ynysig
• Gwneud ein digwyddiadau a’n sesiynau gwybodaeth hyd yn oed yn fwy hygyrch
• Gweithio gyda mwy o weithwyr proffesiynol a grwpiau gwaelodol
• Rhannu lleisiau teuluoedd gyda’r rhai sydd mewn grym i wthio am newid
Mae gennym fwy o ddigwyddiadau a phrosiectau cyffrous ar y gweill ar gyfer Blwyddyn 2, gan gynnwys digwyddiadau chwaraeon anabledd cynhwysol yr haf hwn, a ariennir gan Ymddiriedolaeth Elusennol Albert Gubay, a digwyddiad ar raddfa fawr gyda Chlwb Pêl-droed Wrecsam. Cadwch lygad allan am hyn!
Fel y dywedodd un rhiant-ofalwyr wrthym:
“Byddwn i’n dymuno gwybod yn gynharach pa mor bwysig fyddai’r gefnogaeth hon, er mwyn rhoi’r nerth i mi barhau ar yr adegau pan rydw i wedi rhoi’r gorau iddi ac wedi meddwl na allaf barhau mwyach.”
Rydym mor ddiolchgar i’r teuluoedd a’r sefydliadau sydd wedi ein helpu yn y flwyddyn gyntaf hon ac i Gronfa Gymunedol y Loteri Genedlaethol am eu cefnogaeth. Diolch pawb!
The Bill sets out in more detail its plans for introducing an additional four point test for Personal Independence Payment (PIP) and for cutting Universal Credit health payments for new claimants with a limited capability for work and work-related activity (LCWRA).
The second reading of the Bill will be on Tuesday 1 July. This will be the first time MPs can debate and vote on the Bill.
Tightening PIP daily living component rules
The Bill expands on proposals first outlined in the Pathways to Work Green Paper. It confirms that there will be an additional test for getting the PIP daily living component. The test requires a disabled person (unless terminally ill) to score a minimum of four points in at least one PIP daily living activity.
The Bill makes clear that existing PIP claimants who lose their entitlement to PIP daily living component because of the four point rule will have a temporary 13-weeks run-on in their PIP. This run-on will also apply to any “passported benefits”, such as any Carer’s Allowance or Universal Credit carer’s element payments.
Cuts in Universal Credit health payments for new claims
The Bill also confirms a large cut in the amount of LCWRA element for new claims from April 2026. While existing claimants will continue to receive £423.27 per month, claimants who first establish LCWRA from April 2026 will receive £217.26 per month.
Some new claimants will be protected from this cut. They will instead receive a higher rate of LCWRA element, meaning they will receive the same amount as existing claimants. This will apply to those who are terminally ill and to disabled people who meet “severe conditions criteria”. Those who meet these severe conditions criteria will also be exempt from routine Universal Credit health reassessments.
To be protected under this severe conditions criteria, a disabled person must meet all of the following tests:
They must have a condition that an appropriately-qualified healthcare professional has diagnosed in the course of receiving NHS services.
Their condition will last for the rest of their life.
There is no realistic prospect of recovery of function.
The individual’s level of function must mean they would “constantly” meet the tests to be treated as having LCWRA “on all occasions on which the claimant undertakes or attempts to undertake an activity”.
Other benefits changes included the Bill
The Bill also includes the freezing of the LCWRA element between tax years 2026/2027 to 2029/2030. This will impact all Universal Credit claimants who qualify for the LCWRA element – both existing and new claimants.
Alongside this, the Bill makes provision for a small increase in the amount of the Universal Credit standard allowance.
The Bill makes clear that there will be changes to legacy Employment and Support Allowance (ESA) payments to mirror changes to Universal Credit. This is because some disabled adults have not yet migrated from income-related ESA to Universal Credit.
Explanatory notes published alongside the Bill confirm that the government expects that:
By 2028/29, 800,000 disabled people will be on the new reduced rate payment of the LCWRA element.
As a result of the new four point rule, 370,000 existing PIP claimants will lose their daily living component by 2029/30. A further 430,000 claimants will not get the PIP they would otherwise have been entitled to.
As a result of this change to PIP rules, 150,000 full time carers will lose or not qualify for Carer’s Allowance/the carer element of Universal Credit.
Which parts of the UK does the Bill affect
The changes relating to Universal Credit and income-related ESA will apply to England, Wales, Northern Ireland and Scotland.
Changes to PIP will apply to England, Wales and Northern Ireland. Changes to PIP rules won’t impact Scotland which has its own Adult Disability Payment.
In the letter, Hannah, who is 19, autistic, and has several chronic conditions, explains how getting an EHC plan transformed her experience of school.
Hannah’s letter follows media speculation that the government is considering replacing EHC plans. Thousands of children rely on these statutory documents to get the educational support they’re entitled to.
Hannah’s letter reads:
“It is no exaggeration to say this plan completely transformed my experience of school. Firstly, I was actually able to attend in person again, on a reduced timetable. I received 1:1 support, including help with social skills, pastoral check-ins, a quiet place to go when I felt overwhelmed, and a teaching assistant to support my learning.
“Through my plan I also received transport that meant I could get to and from school safely. And at school, I had someone to help push my wheelchair. My classrooms were moved to the ground floor – meaning I no longer had to rely on other pupils to get to class. These things were life-changing.
“Thanks to my EHC plan, I’m now looking to the future. I’m planning to start a Level 3 Acting and Performance qualification at college in September.”
We are excited to announce the return of our national Contact Awards 2025…and nominations are now officially open!
The Contact Awards recognise the countless and often unrecognised achievements of families with disabled children up and down the country.
At a time when it can be difficult to see any positives, this event is a celebration of all the great things that come with being a family with a disabled child and of the wonderful parent carer community we stand and work together with.
Anna Bird, CEO at Contact, says: “It’s more important than ever to shine a light on the strength, compassion and resilience of families raising children with additional needs and disabilities in the UK. Our awards are our way of saying: we see you, we celebrate you, and your story deserves to be told!”
We are calling for families across the country to nominate their friends, family members, colleagues, as well as campaign groups and forums for a Contact Award. So please get busy nominating!
How to nominate
There are six award categories, listed below. Once you’ve decided who and what category to nominate them for, it’s really simple. Just fill in our online form, explaining why your nominee is a deserving winner, and submit your nomination.
You can nominate as many times as you like, in as many categories as you like – you’ll just need to complete the form again.
Nominations close on 30 July. Shortly after that date, a panel of independent judges will choose a shortlist for each category. Shortlisted families and groups will be invited to a very special awards evening in Westminster, where the winners will be announced.
The award categories
This year our six award nomination categories are:
Parent Carer Award
We want to hear about you or someone you know and the amazing things they do to make sure their disabled child and family can take part in everyday life.
Change Maker Award
Nominate an individual, family or a group of parents who have campaigned or worked together to make life better for other families with disabled children in their community.
Proudest Moment Award
Big or small, this is your opportunity to tell us about the challenges your disabled child has overcome that fill you with pride and makes you smile.
Friendship First Award
Tell us how your friend makes your life better as a parent carer just by being in it.
Grandparent Award
Your opportunity to tell us about all the wonderful and everyday things grandparents do for your family.
Sibling Award
Tell us about the often unseen but great things siblings do for their disabled brothers and sisters or that help make mum and dad’s lives just that little bit easier.
The DLA (Disability Living Allowance) Unit is carrying out a review of DLA decisions made between 1 February 2017 and 13 October 2020 on claims for children with congenital heart disease.
They have said that no child will have their DLA award reduced as a result of this exercise. Some families may receive arrears of the benefit.
The DLA Unit is now in the process of writing to families who might have been affected to tell them that it is reviewing their child’s past entitlement. This includes families who were refused DLA during the period in question.
Which cases is the DLA Unit reviewing?
The DLA Unit will only be reviewing cases where both:
A child had congenital heart disease listed as a condition.
It made the decision about the child’s DLA claim between 1/2/17 and 13/10/2020.
It will not be reviewing any decisions it made before February 2017 or after 13 October 2020.
The DLA Unit has also made clear that it will not be reviewing cases where a child was on the maximum rate of DLA payable during this period. That means the high rate of both components (or highest rate care if aged under 3 years). It also won’t be reviewing any decisions that were made by an appeal tribunal.
Why are the DLA Unit carrying out this review exercise?
The Department for Work and Pensions (DWP) says that it introduced medical guidance in February 2017 to help DLA staff make decisions on cases where a child had congenital heart disease.
Following a review, new guidance replaced it in October 2020. The DLA unit will now review decisions it made between February 2017 and October 2020, applying the 2020 guidance rather than the 2017 guidance.
The DWP plans to publish more information about this review exercise in the future.
Parents caring for children with additional needs can bring incredible strengths to the workplace. Adaptability, crisis management, and loyalty, to name a few!
To celebrate Carers Week, we’re sharing simple yet meaningful ways organisations can help carers thrive at work.
Watch Ellie Goff, Business Development Manager at Contact, as she talks to Charlie Beswick, founder of Our Altered Life. Together, they share practical tips and insights that can make a genuine difference.
It’s not just the right thing to do for the wellbeing of carers. By creating a supportive environment, organisations can retain skilled employees, boost morale, prevent burnout, and cut costs!
Ellie and Charlie’s top tips for organisations
1. Normalise disclosure without pressure
Opening up about caring responsibilities needs to feel both safe and optional. Many carers worry about disclosing because they fear judgement and that colleagues may question their ability to do their job effectively.
Managers can foster trust by letting people know there are benefits to disclosing. They can also ask simple, empathetic questions such as, “Do you have any caring responsibilities we should know about to better support you?”.
2. Be flexible
Flexible working hours can be vital for many carers, although some might only need minor adjustments, like arriving slightly later. It’s important to tailor solutions to their specific needs.
3. Set up a peer support group
Establishing affinity groups for carers within an organisation can provide a lifeline for employees. Ellie set up a Carers Affinity Group at Contact to create a safe space for employees to connect, share experiences, and feel understood.
4. Encourage carers in leadership roles to speak out
Leaders and senior colleagues who are open about their caregiving responsibilities send a powerful message. It demonstrates that carers can thrive in leadership roles and validates others’ experiences.
5. Communicate support clearly
Make sure employees are aware of their options by drafting clear, accessible policies. Caregivers need to understand not only what is available to them, but also how to access resources and who to speak to in times of need.
6. Provide training for managers
Empower line managers with the tools to have sensitive discussions. They won’t ever be able to fix the challenges of caring for a child, but they can focus on listening and responding compassionately. Provide clear guidelines for managers on flexible working arrangements, special leave, or other accommodations.
7. Build a culture of compassion
Small moments of kindness go a long way. Carers don’t want pity, and they know their problems can’t be solved by a line manager. But having someone say, “I don’t know what you’re going through, but how can I help?” is really powerful.
Ready to take the next step?
Whether you’re just starting out or looking to deepen your carer-friendly culture, Contact and Charlie can help you with:
Training and awareness for managers and teams
Support with inclusive policies and networks
Expert guidance from professionals with lived experience
Workshops and Webinars on topics tailored to support the parent carers in your workforce
“We welcome the Chancellor’s investment in children with SEND in England, as long as that cash reaches those children. Ministers have a once-in-a-generation chance to give every child the same opportunity to learn while saving the country long-term costs. The detail of how this money is spent now is crucial. It must be focused on the frontline, equipping mainstream and special schools to allow all children to thrive.
“Investment alone won’t solve the SEND crisis in England. So we welcome the Government’s confirmation that it will publish a White Paper in the autumn, ending the speculation about its plans for SEND reform.
“These proposals need to set out the robust legal safeguards we need to make sure councils, schools, nurseries, colleges and health services act earlier to embed the support children need. Those that fail should face consequences.
“We look forward to working with government to ensure there is wide and meaningful engagement with parents and young people in advance of the Schools White Paper and on the proposals once published this Autumn.
“We will continue to seek reassurance that the right investment will come with legal teeth for schools to prioritise early help, and to make sure no young person who needs an individual, legally guaranteed plan will lose that protection.
This Carers Week, parent carers from Contact share why flexible working is more than a perk – it’s a lifeline.
Every day, thousands of parent carers across the UK are navigating the complexities of caring for their disabled children. With endless paperwork, hospital appointments, school meetings, and therapy sessions, all on top of the usual demands of parenting: it’s tough.
Many of Contact’s employees are parent carers, including staff delivering frontline services to families. We know that their expertise, coupled with their lived experience of caring for a disabled child, is an invaluable mix. But this is only possible because we are committed to being an inclusive and supportive workplace for carers. Sadly, too many workplaces aren’t.
Jade and Jaime, who are both working parent carers at Contact, show why flexible, remote work isn’t just “nice to have.” It’s the only way many families can keep their heads above water.
Jade: Social Media & Online Communities Officer, and mum to Finn (9)
Jade’s son, Finn, has a rare genetic condition called Houge-Janssens Syndrome type 4. His condition causes severe epilepsy and learning disability.
Jade says: “Life with Finn involves physiotherapy, specialist appointments, school meetings, and sometimes emergency trips to hospital. There are no typical weeks really. Finn has prolonged uncontrolled seizures and his epilepsy is drug-resistant, which means every time he has a seizure, he is hospitalised. This makes it tricky to be at work when I need to be in the back of an ambulance.”
Before joining Contact, Jade struggled to find an employer who understood this reality.
“I’ve missed out on opportunities before because of having ‘too much time off’ with Finn. I even lost one job due to medical appointments and hospital admissions put down to ‘sick leave’. It feels frustrating, because I feel I have a lot I can offer the workplace; I just need the chance.
“Here at Contact, I feel supported to be there when I’m needed. We have a generous paid carer’s leave policy, so I don’t have to panic or use annual leave or sick leave to care for Finn. Working from home means I can be there when Finn’s school transport picks him up each morning and drops him off in the afternoon. Flexible working means I can arrange my hours around appointments.
“Offering that level of support and understanding to parent carers is absolutely key. I can guarantee that if more employers did so, they’d have a team of fiercely loyal, hardworking individuals on their hands. We didn’t choose this life for ourselves or our children. Many of us had hoped and worked hard for careers and have our own personal aspirations that most workplaces make feel impossible.”
Jaime: Grants Coordinator, and mum to Jess (16)
Jaime’s daughter Jess lives with condition that causes chronic pain and frequent joint dislocations, including her ribs and jaw. Jess also experiences debilitating anxiety, especially around leaving the house for fear of injury. She is studying online for her A-levels, but requires constant support at home.
“Jess often dislocates joints just turning in bed. If she can’t get up in the morning, I’m helping her put things back into place – sometimes ribs that affect her breathing. I also monitor what she eats in case her jaw has dislocated again.”
Jaime has also cared for her father at the same time, often managing two complex care needs under one roof.
“It’s not the late nights or early mornings, it’s not the physical pressures, it’s the constant mental pressure. I am also a carer for my father who lives with us, and it’s a never-ending juggling act. I am always needed by someone, and that gives me very little time to switch off or detach.”
Jaime is able to keep working because of the adjustments Contact is able to make to support her.
Jaime says: “My work at Contact is incredible and allows me to fit in her doctor’s appointments and to be around to support her. I’m able to work early before Jess gets up for the day and to take breaks when I need to. Without flexible, remote working, I don’t think I’d have been able to work for the last few years.
“It also allows me peace of mind. I know that if I suddenly have to take a few hours off to support Jess, I can do so without worrying.”
A system that understands carers isn’t optional – it’s essential
Our Counting the Costs research found that 62% parent carers have had to give up paid work or reduce hours. On average, they lose over £21,000 a year in income.
But as Jade and Jaime’s stories show, this doesn’t have to be inevitable. At Contact, we’re proud to offer remote and flexible working, as well as a culture rooted in empathy and support. We don’t just accommodate carers: we welcome them, and we learn from them every day.
“You aren’t alone. Raising a disabled child takes a city. Even when you don’t have hands-on help, online communities and support groups can be your lifeline. Use Contact. Use your community. We’re here.”
Jade adds: “When you see Contact’s content on social media, every post was shaped by my lived experience as a parent carer and the expertise of our helpline team. We’re not a faceless organisation. We’re real people with real stories, and we’ve got your back.”
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