Please note: these Contact focus groups are separate from and in addition to the Law Commission’s discussion groups for parents, which are now fully subscribed.
What is in the Law Commission’s consultation?
The Law Commission consultation on reforming social care asks whether:
There should be a new legal framework for disabled children’s social care, taking disabled children out of section 17 of the Children Act 1989.
Whether there should be national eligibility criteria for disabled children’s social care.
How we should define disability.
What remedies should be available for children and families when things go wrong.
The Department for Education asked the Law Commission to review disabled children’s social care law because it is too complicated, inaccessible and potentially unfair for disabled children. The legislation also includes offensive language when talking about disability. The consultation closes on 20 January 2025.
In yesterday’s budget, the Chancellor set out a number of changes to the benefits system. Our benefits experts break down what these changes will mean for your family.
Carer’s Allowance earnings limit
The biggest news story for carers was the announcement that the Carer’s Allowance earnings limit will increase to £196 per week from April 2025. This is equivalent to working 16 hours at National Living Wage.
The earnings limit is the maximum amount a carer can earn without losing entitlement to Carer’s Allowance. This increase of around £45 on the current earnings limit is the biggest increase since Carer’s Allowance began back in 1976. The government has also committed to align future National Living Wage and earnings limit increases.
Universal Credit announcements
Alongside this, the budget also included a number of announcements about Universal Credit:
Confirming that the managed migration of people on income-related Employment and Support Allowance will be brought forward. This will now start from September 2024, and complete during 2026.
Capping the maximum amount that can be deducted from a Universal Credit award to repay a debt or loan. The maximum deduction will drop from 25% to 15% of that claimant’s standard allowance. This allows Universal Credit claimants to repay debts or loans by making smaller payments over a longer period of time.
Amending the Universal Credit severe disability premium transitional protection rules to better support those moving from supported or temporary accommodation into rented housing.
Other changes
And other changes included:
£1 billion of funding to local authorities to extend the Household Support Fund and Discretionary Housing Payments beyond April 2025. These schemes help low-income households facing hardship and financial crisis, including supporting them with the cost of rent and other essentials.
Extending the current Help to Save scheme until April 2027 and extending eligibility to all in-work Universal Credit claimants. Under this scheme, low-income savers can get a government bonus of 50p for every £1 they save in a special account.
£240 million funding for new pilot schemes to help people move back into work.
Scrapping plans to base the high-income Child Benefit charge (where Child Benefit is clawed back via income tax) on a household’s joint income, rather than on individual income.
Funding a new package of anti-fraud and error measures. This includes recruiting an additional 3,000 staff, introducing new legal powers for the Department for Work and Pensions, and requiring Universal Credit claimants to make periodic redeclarations of their household circumstances.
State Retirement Pension and Pension Credit payment rates will increase by 4.1% from April 2025. Working age benefits will only increase by 1.7%.
The Chancellor also announced that the government intends to set out planned reforms to the health and disability benefits system early next year.
To help meet our target, we have partnered with our kind Big Give match-funding partners, who will double every pound donated to our appeal from Tuesday 3 to Tuesday 10 December.
This means every gift makes twice the impact for families who need our crucial advice and guidance.
Whether you donate yourself or share information about our Big Give appeal with your friends, family and colleagues, we would really love your help.
The difference your support will make.
There is more demand for Contact’s free services than ever before. Parents tell us they are in a constant battle to get support.
As a charity, we rely on the generous contributions of individual givers to keep our services going. And that’s why we’re asking for your donation this winter.
So please save the date!
“Contact has given me a place to start”
The donations raised from our Big Give appeal will enable our compassionate team of parent advisers to prevent stress, isolation and financial crisis for vulnerable families.
Together, we will be the lifeline for parent carers like Chloe*. Because of our life-changing support, Chloe now feels more confident in navigating the vast challenges that come with caring for a disabled child. She feels happier and better informed about her rights to benefits to afford everyday essentials like heating and food.
“It can be so overwhelming with how to help three children with additional needs but, Contact has given me a place to start and is helpful in giving me a focus rather than being overwhelmed and depressed. Thank you for your time, and thank you for sharing your knowledge of resources to help me.”
The Department for Education (DfE) asked the Law Commission to review disabled children’s social care law because it is too complicated, inaccessible and potentially unfair for disabled children.
We know that transport to school and college is often the glue that holds families together. But so many families are going without.
Decisions to change or cut school transport are leaving children out of education, forcing parents to give up work, leaving siblings with a shortened school day, and often pushing families into financial hardship.
We want to get a better picture of the school transport picture so we can campaign to change this.
School Transport is no different to the rest of the system. It is facing huge challenges, alongside funding cuts, which is causing families undue stress and difficulty.
Your responses will help us to show what is really happening for families with disabled children – the very real impact of cutting or removing travel options.
We are ready to put the results of this survey to good use. We will be reporting on this in the media and to parliament, using the results to raise awareness and fight for change.
The survey takes about 15 minutes to fill in and will close on 18th November at 10am. And to thank you for taking part, you’ll have the chance to win one of ten £50 vouchers!
Last week, our helpline gave information & advice on transport to more than 50 families during a Facebook Q&A session. There were questions about eligibility decisions, the safety and suitability of transport provided, cuts to post-16 and more challenging situations.
The survey is part of our school transport campaign. Funded by the Motability Foundation, the campaign aims to ensure local authorities and decision makers understand the importance of school transport to disabled children, young people and their families.
Our campaign is informed by parent voice. We will continue to work alongside families to raise awareness and lobby for change.
The government has opened a major consultation on the future of the NHS, inviting everyone to suggest ways to improve our health service.
Launching the “national conversation”, Prime Minister Keir Starmer invited patients, the public and experts to help shape the next NHS Long Term Plan.
What is the NHS 10-year plan, and why is it important?
The Government’s 10-year plan for the NHS is due to be published in spring 2025. The plan will set out NHS goals and priorities for the next decade and draw on Lord Darzi’s recent independent report into the state of the health service. Feedback from the “national conversation” will also be used to shape the final plan.
Health Secretary Wes Streeting has already revealed that the 10-year plan will focus on three main ‘shifts’:
From analogue to digital healthcare, developing the NHS app and creating a single patient record.
From hospital to community, creating neighbourhood health centres with GPs, nurses, health visitors, physiotherapists and mental health workers under one roof.
Sickness to prevention, preventing ill health in the first-place, asking people to use wearable tech like smart watches to monitor their own health.
Mr Streeting also stressed he wanted to see a shift from “late to earlier diagnosis”. This is especially important for all the disabled children currently on very long waiting lists for diagnostic assessments.
How can I respond to the consultation?
You can have your say via the Change NHS Platform, which will ask you to create a log-in. The process is simple.
You are then guided through a short series of questions. The form provides enough space for you to explain how the NHS works or doesn’t work well for your child and make suggestions.
Parents with disabled children may want to mention, for example:
The need for significant investment in specialists for disabled children, like speech and language therapists and psychologists (one of Contact’s key SEND asks).
Access to NHS continuing healthcare funding if your child has complex health needs and disabilities.
The need for more support in the community for autistic and learning-disabled children and young people in crisis.
Access to GP or dental appointment for your child.
Access to treatments for your child currently not available on the NHS.
Access to genome sequencing.
Anything else that could make NHS services better for you and your child.
You can also email our health lead [email protected] if there are issues you would like us to highlight in Contact’s response.
The fining of parents whose children cannot attend school as they are awaiting an appropriate school setting, or their child cannot attend because of illness or unmet need.
Long waiting times for health assessments and diagnosis.
The postcode lottery of SEND funding.
The need for greater support for children with SEN in mainstream schools.
The lack of accountability for local authorities who routinely breach their legal obligations to disabled children.
Non-elective home education and illegal exclusions.
Jess Aato said: “We seem to forget that education is a right, as well as a legal requirement. Where is the right to education for children with SEND? The delays parents experience serve only as a ‘how high can you jump?’ barrier, and send the signal that children with SEND are second- class citizens.”
What Contact thinks
We welcome that so many MPs understand the challenges within the current system and recognise that it is indeed in urgent need of change. And we are grateful that the Minister for Schools has responded by saying it is vital for the SEND system to be fixed and that it is one of her priorities.
We want the government to establish an accountability system so that it is no longer acceptable for local government to routinely ignore the law. Our accountability paper details a few quick wins that would strengthen the ability for the government to ensure that SEND law is implemented.
We would like to hear about your experiences of the SEND crisis and how supported you have been by your local authority.
Contact Cymru is running several workshops this autumn, both online and face-to-face.
Sessions are open to parent carers of children with disabilities or additional needs (with or without a diagnosis) who live in Wales. Take a look at what’s on, and follow the links to find out more and book a place.
Our 6-week Building Resilience programme starts in November, with sessions usually running on Tuesday mornings at the Serennu Children’s Centre, Newport.
Led by Contact’s Parent Advisor, Sophie Barker, and wellbeing Coach Philomena Jordan-Patrikio, these sessions take place in a fun, informal and supportive environment and are designed to help you build confidence, manage stress and make positive changes. You’ll come away with new skills, connections, and a sense of empowerment!
For any queries related to these workshops, please email [email protected] .
Gweithdai i deuluoedd Cymraeg
Mae Contact Cymru yn cynnal sawl gweithdy yr hydref hwn, ar-lein ac wyneb yn wyneb.
Mae’r sesiynau’n agored i rieni sy’n gofalu am blant ag anableddau neu anghenion ychwanegol (gyda neu heb ddiagnosis) sy’n byw yng Nghymru. Cymerwch olwg ar yr hyn sydd ymlaen a dilynwch y dolenni i ddarganfod mwy ac archebu lle.
Mae ein rhaglen Adeiladu Gwydnwch yn rhaglen 6 wythnos am ddim sy’n dechrau ym mis Tachwedd ac yn cael ei chynnal unwaith yr wythnos. Cynhelir y sesiynau hyn gan Gynghorydd Rhieni Contact Cymru, Sophie Barker, a’r Hyfforddwr Llesiant Philomena Jordan-Patrikio, mewn amgylchedd hwyliog, anffurfiol a chefnogol ac maent wedi’u cynllunio i’ch helpu i fagu hyder, rheoli straen a gwneud newidiadau cadarnhaol. Byddwch yn gadael gyda sgiliau newydd, cysylltiadau, ac yn teimlo wedi’ch grymuso!
Cyfle i ddeall mwy am brosesu synhwyraidd a sut mae’n effeithio ar sut rydyn ni’n teimlo, yn ymddwyn ac yn dysgu. Archwilio strategaethau i gefnogi eich teulu.
Mwy yn dod yn fuan
Byddwn yn ychwanegu mwy o weithdai ar-lein yn y dyfodol agos, felly cadwch lygad ar ein tudalen Eventbrite Contact Cymru am fanylion neu edrychwch ar dudalen Facebook Contact Cymru. Ar gyfer unrhyw ymholiadau sy’n ymwneud â’r gweithdai hyn, anfonwch e-bost at [email protected].
The consultation, led by Commissioner Alison Young, is part of a major review to make the law “fairer, simpler and up-to-date”.
Currently, a patchwork of legislation governs disabled children’s social care law, some of which dates back more than five decades. This has contributed to a variation in the amount and quality of support local authorities provide. It’s also unnecessarily complicated the routes to accessing support for parents with disabled children.
A promising consultation that aligns with our asks
Anna Bird, Contact’s CEO, says:
“The Law Commission’s consultation proposals are extremely promising and align with some of Contact’s key social care “asks” to address the broken social care system for families with disabled children. Together with the Disabled Children’s Partnership (DCP), we have campaigned over many years to increase funding for social care and ensure families can access help from social services more easily and fairly.
“The Law Commission proposals are a helpful step in that direction. They go some way to end the pervasive culture of blame parent carers encounter when they ask social care for help and make it much clearer what help families are entitled to. We would especially welcome a single duty in legislation to assess a disabled child’s social care needs and national eligibility criteria for disabled children to access support.”
Stronger approach to ending conflict needed
Anna continues:
“Other proposals could be stronger. We would like to see a stronger approach to ending conflicts between health and social care services that leave disabled children with the most complex needs without vital support. We want to understand how well the proposals improve and increase families’ access to effective support when they need it, including carers. And we will be testing those proposals with parents in focus groups in the coming weeks and months so we can feed into the consultation.”
We will work with parents, the DCP and the wider sector to understand the full implications of the reform proposals.
What questions is the Law Commission asking in its consultation?
The consultation asks more than 80 questions. These include:
Whether there should be a new legal framework for disabled children’s social care, taking disabled children out of section 17 of the Children Act 1989.
Whether there should be national eligibility criteria for disabled children’s social care.
How we should define disability.
What remedies should be available for children and families when things go wrong.
The Department for Education asked the Law Commission to review disabled children’s social care law because it is too complicated, inaccessible and potentially unfair for disabled children. The legislation also includes offensive language when talking about disability.
You can respond to the consultation on the Law Commission website. We will be hosting focus groups for parent carers to collect your views for our final response.
Two new reports from the Disabled Children’s Partnership (DCP) call on the government to put disabled children at the heart of decision-making – and focus on Black and Asian ethnic minority children – when planning support services.
Anna Bird, Chair of the Disabled Children’s Partnership and CEO of Contact, says:
“More than one in ten children in the UK are disabled. Yet their lives – and those of their families – are often invisible in debates about public services and priorities. As a result, parents face a constant battle to get the support their children need. Children are not able to fulfil their potential, and families are not able to live the lives they want. This report highlights the need to prioritise disabled children and their families and the action we need to see from the new government. “
The report also recommends committing to a cross-party strategy and investment – particularly in early intervention.
Meanwhile, Support not suspicion shows that assumptions about race mean social workers have a tendency to approach ethnic minority families through a child protection lens, rather than offering support in caring for their disabled child.
The research also highlighted a sense of isolation amongst families. Many talked of a lack of understanding of their situation during social care assessments.
The DCP is urging the Department for Education to focus on supporting disabled children in black and Asian ethnic minority communities in its reforms to children’s social care.
Come and say hello to Ellie and Lisa from Contact at the free Kidz to Adultz Exhibitions coming up across the UK.
We’ve teamed up with Kidz to Adultz to create a new and welcoming space at each exhibition where parents, carers and disabled children and young people can come together, share experiences and learn from each other.
Kidz to Adultz exhibitions are free and dedicated to children and young people with disabilities or additional needs. Parents, families, carers, and healthcare professionals are all welcome to attend. Come along, try out the equipment and products, join in the fun and participate in the activities taking place throughout the day.
Our team in Northern Ireland is hosting a free wellbeing workshop for parent carers in Northern Ireland next month.
This online session will focus on stress and how to manage it. We’ll explore different tools and techniques for reducing your stress levels and learn how to put them into practice.
It’s also an opportunity to meet other parent carers and share your experiences if you’d like to. We’re offering the workshop on two different dates. Click on your preferred date below to find out more and book your place:
Next month we expect the Law Commission to publish a consultation on proposals to reform disabled children’s social care in England.
The Law Commission aims to ensure the law is as fair, modern, simple and as cost-effective as possible. Their consultation on disabled children’s social care, led by Commissioner Alison Young, will look at the laws surrounding this issue, many of which are outdated.
We welcome this consultation as a once in a lifetime opportunity to fix the law. We hope the result is that disabled children and their families can access social services more easily and consistently across the country.
Amanda Elliot, policy lead for social care at Contact, said:
“We know from families that it’s getting harder and harder to access social care support for their disabled child. There is often no transparency about eligibility criteria, and families say the system is adversarial. How can it be right that a family asking for help to support their disabled child is assessed by the same system that assesses a child at risk of neglect and abuse?
“The system is fraught with issues and anomalies. It often leads to a situation where two families, whose children have the same condition, get completely different amounts of social care support because they live in two different local authority areas. Or a parent seeking respite from social services ends up having their child put under a child protection order. In addition, the complaints system is fiendishly complicated.”
Our social care asks
In advance of the Law Commission launching its consultation, we’ve published a social care briefing. The briefing pulls together what we are hearing from parents through our helpline, local offices and online communities. In it, we set out how the social care system needs to improve to help families with disabled children.
We want the proposals to:
Establish national eligibility criteria for disabled children’s social care support.
Create a separate social care assessment pathway for disabled children, distinct from the one for children at risk of neglect or abuse.
Expand and improve the quality of the disabled children’s social care workforce and improve commissioned services and the direct payments offer to families.
Strengthen the system of accountability to ensure local authorities comply with their social care legal obligations under the Children Act 1989 and Children and Families Act 2014.
In the short term, we want to see:
The government to address the £573 shortfall in funding for disabled children’s services and double the funding for the Short Breaks Innovation Fund.
More flexibility for direct payments – allowed to pay for family member to care or pay for an activity.
Better availability to advice about rights and entitlements for families under existing laws.
The deadline is fast approaching to complete our Counting the Costs survey – thank you to everyone who’s already taken part.
If you haven’t yet and keep thinking that you’ll do it tomorrow – now is the time!
The new government must hear the voices of disabled families and how the policy decisions they are making right now are affecting you.
We know that there are many demands on your time. but it’s important that we are honest with you: without evidence from families such as yours, our lobbying in Parliament and our fundraising bids will not be as successful.
I just can’t right now. How else can I make an impact?
If you’re reading this thinking “I get that, but right now, I’ve got zero capacity”, we hear you.
Could you help us instead by sharing the Counting the Costs survey link on your social media – particularly into any disability or SEN focussed groups? We’re keen to reach as many parent carers as possible.
Siobhan is a parent carer to three amazing children with additional needs, including one with complex medical needs. After discovering Contact on social media and finding valuable help and advice for her family, she decided to invest a few pounds a month in our charity lottery.
Siobhan shared her excitement with us:
“I honestly never thought we would be so lucky to win anything! It couldn’t have come at a better time for us, as this year has hit us hard financially.
The things I’ve learnt from Contact on social media have been invaluable. The work they do is fantastic!
So if anyone reading this can spare a few £s a month and wants to support a worthy cause, choose the Contact lottery!”
The Darzi review into the state of the NHS has been published this week. In this story we summarise what the review found and what Contact wants to happen next.
What is the Darzi Review?
After the election, the new Labour government asked Lord Darzi, a surgeon and former health minister, to investigate issues within the health service. The aim was to highlight areas for a longer-term improvement plan.
The results of the report are now in and describe the NHS as being in “serious trouble”.
“Devastating, heartbreaking and infuriating” is how Prime Minister Keir Starmer summed up the findings shortly after. However, he also said that the NHS was “broken but not beaten”.
What does the report say?
The report describes the NHS as being in a “critical condition”.
Describing long waiting times in A&E causing thousands of extra deaths and higher cancer mortality rates than other countries, the report makes for difficult reading.
The report notes a rise in multiple long-term conditions amongst young people, including mental health, asthma, obesity and diabetes. They are also waiting longer than adults to access healthcare.
Many families have, however, welcomed the spotlight finally shone on what they describe as a “crisis” amongst children and young people’s health.
“I am relieved that someone is saying what we have all been experiencing for years – maybe this will actually mean things change for the better”.
Katie, parent carer to Thomas who is 16 and has complex learning disabilities.
Lord Darzi also highlighted that factors such as unsuitable housing have been “moving in the wrong direction over the past 15 years”. This is an area that we continue to campaign on.
Dire state of social care
Lord Darzi is also concerned about the “dire” state of social care. This he said was not “valued or resourced sufficiently”.
He highlighted the ever-growing gap between people’s needs and publicly-funded social care and the burden this is placing on families and the NHS. Again, we highlighted this in our roadmap for the new government.
What is the government doing in response?
The government has announced that it will publish a 10-year plan to reform the NHS. This is due for publication in spring 2025.
What we want to see
The 10-year plan must prioritise health services for disabled children, including focusing on reducing waiting lists for assessment and diagnosis, and access to special equipment and therapies.
The plan must have clear goals on reducing health inequalities that disabled children from Black and Minority Ethnic communities experience.
Previous research tells us that four in 10 (41%) families with disabled children have a home that doesn’t meet their child’s needs, and over a quarter (26%) say their home needs adaptations to meet their child’s needs.
There is a huge shortage of affordable and accessible housing for families with disabled children. Families are also waiting too long for housing adaptions needed to help manage their child’s condition and keep them safe. Affordable and safe housing for young disabled adults is almost non-existent too.
Our Counting the Costs survey is a chance for families across the UK to have your voice heard about the financial impact of having disabled children.
Your answers will help us identify our campaign priorities for the next few years. We’ll also use what you tell us to explain to government what practical steps they can take to help you.
If you can spare around 20 minutes, we’d love you to take part. (There’s also a chance to win a £50 voucher by taking part too!)
More than 1,000 of you have already taken part. Thank you for helping us put the voices of families at the forefront of government policymaking.
Need advice about housing?
If you’re worried about the suitability of your home for your child’s needs, we have information on our website:
Most children and young people will now be back at school or college. For some disabled children, that means back to school transport.
School transport, provided by the local authority (or the education authority in Northern Ireland), can be the glue that helps hold things together for many families. But when it goes wrong, things can easily fall apart. And we know many families are starting this new term without the right transport support.
Our advice on school transport
Local authorities/the education authority have different travel arrangements they provide for eligible children and young people.
There are different eligibility rules across the UK, which can include looking at the nature of distance of route and individual needs.
If you are unhappy with a local authority decision on school transport, either because they have decided your son or daughter is not eligible, or you think that the transport offered is not suitable, you might want to follow your local authority’s appeals procedure for transport decisions. The local authority publishes this alongside the transport policy.
More information and advice
Things are hard – with many cash-strapped authorities having to review what transport options they have on offer for families, especially post 16, often leaving them with nothing.
If you are facing difficulties with school/college transport and need some advice, contact our helpline.
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