Category: Other

We have now heard from the main political parties on what they will do should they get elected.

We’ve taken just one thing from each of the manifestos that would be a better deal for disabled children, young people and their families:

Conservatives – create 60,000 school places, plus building 15 new schools for disabled children.

Greens – push for mandatory free school transport for 16-18 year old disabled pupils.

Labour – Sir Keir Starmer says his party will hold local authorities to account to improve the services they provide for disabled children.

Liberal Dems – Sir Ed Davey has pledged to be the voice of carers, including reform of Carer’s Allowance and immediately increasing it by £20 a week, expand eligibility and increase how much carers can earn before losing the benefit.

These commitments are all part of our Roadmap for the next government. If you haven’t already, please email your local candidates about disabled children.

Don’t forget to register to vote, deadline tomorrow or get a postal vote by Wednesday 19 June.  

With the General Election just 3 weeks away, now is the time to ask your local parliamentary candidates to pledge their support to unpaid carers and disabled children if elected.

Please share our Roadmap for the next Government with your local parliamentary candidates. We have set up an email to send to your local candidates to make it quick and easy for you. 

Don’t worry if you don’t know who your local candidates are, if you just put your postcode in, our system will email all of those standing for election in your area.

Reduce, Revive, Roll-Out

Disabled children deserve a government that is prepared to think big and to build a society where everyone is given their own best chance to be successful. 

That’s why Contact is calling on the next government to:

Contact’s Roadmap for the next government sets out 10 steps create meaningful change for seriously ill and disabled children. Our 10 successful steps include scrapping the carer’s allowance earnings limit, fixing Universal Credit and establishing accountability within the education, health and care system so the rights of disabled children can no longer be ignored without consequences.

Email your local candidates or Tweet your local candidates

Why this matters?

It is very important that as many parliamentary candidates as possible pledge to support the rights of disabled children and commit to pursuing policies that will increase equality for families with disabled children.

The onus should not always be on parents to battle for these services, we have enough on our plates on a daily basis. I want to see the next Government removing barriers to social care and making the process more needs based

Adele, parent carer to Molly

By supporting our action to contact your local parliamentary candidates you are helping to ensure that the rights of disabled children and their families are prioritised by the next government. 

Although the General Election isn’t until the Thursday 4 July, there are a few deadlines that you need to know about sooner.

If you’re voting in person, now is the time to check that you can easily locate your photo ID, as you’ll need it to vote. The list of what is considered acceptable ID can be found here. If you don’t have any of these you can apply for a free Voter Authority Certificate.

All polling stations should be accessible, if you are concerned about any accessibility issues please check with your local council. 

Key dates

Tuesday 18 June by 11:59pm

Wednesday 19 June by 5pm

Wednesday 26 June by 5pm

Thursday 4 July

Polling stations are open from 7am to 10pm

Related Information

Easy read information explaining more about voting and the General Election.

Read our Roadmap for the next Government 

The Disabled Children’s Partnership, led by Contact, has launched a new report This Is My Life: Hear Me, Help Me. The report is based on views shared by more than 600 disabled young people aged 11-25.

To mark the launch of the report, the research featured in an episode of FYI, the weekly news show for young people on Sky Kids and Sky News. The episode focused on disabled young people and highlighted their experiences.

The programme is really powerful as it shows young disabled people talking directly about their lives and the challenges they face.

What did young people shared

The results paint a concerning picture, showing that only one in five (20%) feels that they have the right amount of formal support to achieve the things that they want in life. Satisfaction with levels of support appears to decline as children get older with only 17% of 19-25 year olds happy with support levels, compared to 29% in 11-15 year olds.

When it comes to having their voices heard, just one in five (20%) disabled young people feel that their views and opinions are taken into account by health and social care workers and a further 90% feel their parents are not getting the right amount of support from the social care system – with only one in ten claiming to be satisfied with the assistance they receive.

Read the Easy Read format of the report

Enough is enough

Anna Bird CEO of Contact and chair of the Disabled Children’s Partnership said:

“The results of this report are deeply concerning and show that sadly, the system in England continues to fail to meet the needs of disabled young people who are left feeling invisible, that they just don’t matter and that their futures do not count. This is placing many of them and their families under enormous strain trying to battle against a system that has borne the brunt of spending cuts and is increasingly difficult to navigate.  

“Enough is enough – we are imploring the next government to put the needs of young disabled people front and centre. They have the right to pursue their life goals, feel safe and secure in their home, get an education and undertake activities they enjoy. With the right support they can develop essential life skills, grow in confidence and look forward to a promising future. This is the least they deserve”.

You can now translate the information, advice and support on our website into the language of your choice and simplify content into bite-sized chunks to make it easier to understand.

The new ‘translation’ and ‘page summariser’ tools can be found in the Recite Me Accessibility Toolbar, which we launched last year to provide a more digitally inclusive experience for everyone visiting our website.

Where can I find the Recite Me Accessibility Toolbar?

It’s quick and simple to access the toolbar:

Once you’ve opened the toolbar, you can click on the different options to customise your experience. For more information on what each tool does, take a look at the Recite Me features page.

Try the translation tool

To change language using the translation tool, click the translate icon.

Select a language from the list, and the whole website will be translated into the language of your choice; some languages also have an audio option. Languages available include Arabic, Polish, Punjabi, Somali, Urdu and Welsh. To see the full list of languages, click the “Accessibility toolbar” link in the top navigation bar, and select the translation icon.

Please note: The Recite Me assistive translation tool, which uses third-party providers including Google, Microsoft and Amazon, offers an approximate translation of our online information, advice and support. We provide this tool for your convenience only, and we do not warrant the accuracy of, nor are we liable for any action taken as a result of, any translation generated by the tool.

Summarise a page

Click the summariser icon and the webpage content will automictically be simplified into digestible summaries, making information more accessible and reducing reading time.

Using this icon will also spell out acronyms, such as ‘DLA’ or ‘PIP’ and can be read aloud by the screen reader.

We hope you find these new accessibility tools helpful.

Ministers are considering cutting back funding for the long-awaited roll of out NHS eye testing for pupils in all English special schools due to be launched this year.

According to the Association of Optometrists (AOP), reported in Optometry Today, the government wants to slash funding for the service by up to 30%.

The AOP described a proposal to cut the per pupil provider fee from £116 to £81 as “an act of sabotage” to a “lifesaving” scheme.

Contact’s Chief Executive Anna Bird, along with 12 other charities, last week signed a letter to public health minister Andrea Leadsom urging the minister to not water down the scheme.

The charities are seeking an urgent meeting with the minister to air their concerns before any funding decision is made.

Contact, with SeeAbility and Mencap, have long argued that the new service must be adequately funded and delivered by autism and learning disability trained optical practitioners to ensure our most vulnerable children are ability to access sight tests.

The letter states: “Concerns are increasing over the quality of what might be commissioned in the future and successful elements of the [existing] service being removed in a full national rollout…”

Ministers promised to extend NHS in-school eye tests to 165,000 special school pupils this year via a new service. Integrated care boards (ICBs) will get funding to commission services for schools in their local area.

Currently only 9% of special school pupils receive the eye testing service even though children with a learning disability are 28 times more likely to have a problem with their eyes and/or sight.

Contact’s information and advice about eye care

Find out more about how to care for you disabled child’s eyesight and read out Contact’s parent guide to eye care for children with autism and learning disabilities.

If you are autistic or the parent or carer of an autistic person would you like to help others understand more about autism? We’ll give you training and all the support you need to help other families.

We’re looking for autism peer educators in London and the following regions:

If you live in London and this opportunity is of interest to you please visit our Peer Educator London Expression of Interest page.

OR if you live in one of the other regions listed please apply using one of the areas listed below visit our Peer Educator Expression of Interest page.

Please note applicants must be willing to travel to facilitate face-to-face workshops.

Peer recruitment is part of our work with Autism Central to offer families and carers of autistic people high-quality and easily accessible autism education, training, and support through peer educators, alongside our dedicated website.

New research from the End Child Poverty Coalition (ECPC) shows that the government’s current two-child limit on benefits policy is pushing families with disabled children even further into poverty.

The two-child limit policy introduced in 2017, restricts means-tested benefits like universal credit and child tax credits to the first two children in most households. As a result, affected families miss out on benefits worth over £3,000 a year per extra child after the second.

The policy formed part of the government’s drive to reduce welfare spending and its belief that removing eligibility for benefits for a family’s third and subsequent children would encourage parents to move into work, or work more hours. However, the new research from the ECPC reveals that the policy is hitting many parents with at least one disabled child most severely with 20 per cent of all households affected by the two-child limit having at least one disabled child and impacting 87,500 families with a disabled child.

The ECPC says removing the two-child limit on benefits would result in lifting 300,000 children out of poverty overall and mean 800,000 would be in less deep poverty.

Una Summerson, Contact’s head of policy said: “As well as scrapping the two-child limit on benefits there are other changes that would help families with disabled children avoid being pushed further into poverty. For example, scrapping the Carer’s Allowance earnings limit. This would allow carers to earn more without losing their entitlement and avoid the risk of overpayments.  

“We also know that more than100,000 disabled children would be better off by around £2,290 a year if the 50% cut to the lower child disability addition under universal credit was scrapped. This, and other quick fixes to Universal Credit such as making it easier for disabled young people in education to claim, could put more than £200 million back into their pockets.”

If you have a disabled child, or you are on a low-income or not working, you may be entitled to certain benefits and tax credits to help with the extra costs you face. Visit our webpage for more information.

Find out more about our Carer’s Allowance campaign.

Today, Friday 26 April is Undiagnosed Children’s Day – an important campaign organised by SWAN UK (Syndromes Without a Name), to help raise awareness of undiagnosed genetic conditions.

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed and around a third of families who get in touch with our rare conditions officer at Contact have a child with an undiagnosed condition.

Children living without a diagnosis often have lots of medical appointments, and their parents can worry that they won’t get the support they’re entitled to.

If you don’t have a diagnosis for your child, we have lots of information on our website, including:

Did you know that your child doesn’t need a diagnosis to access care and support?

This includes support from social services, benefits such as Disability Living Allowance (DLA) and support in education.

Meeting other parent carers

If your child is living without a diagnosis, you’re not alone! Other parents with disabled children can be a great source of companionship and support. And even if your children don’t share a condition, many parents find that the issues they face are the same.

One way of meeting other families is by joining a local support group, many of which are not based around a single condition.

You can also find parents across the UK in our private Facebook group, a safe space to talk to other families about a whole host of topics, from behaviour, eating and sleeping to education, health and social care.

We’ve been working in partnership with the National Development Team for Inclusion (NDTi) since 2021 to support to young disabled people aged 16-25 in England to help them build confidence and make plans for the future.

Funded by the National Lottery Community Fund, our Time to Talk project also helps families, carers and professionals to raise aspirations and encourage independence for the young people they support.

Join us online and celebrate!

As we come to the end of the Time to Talk project, we’d like to invite you to a series of online sessions taking place from 10-13 June, to celebrate this work and share learning.

Join us and discover ideas and evidence of how personalised strengths-based approaches enable young people to build confidence, set their own goals, prepare for adulthood and have their voices heard. You’ll also hear from young people about their lived experiences, journeys and achievements.

All sessions are free and open to all including young people, family members, those working in youth and community sector, careers, participation, advocacy, education, social care and health sector. You can join as many sessions as you choose.

Find out more about what’s happening and when and register to join, by looking the full programme of sessions over the 3 day celebration.

Contact’s information about preparing for adulthood

For advice on supporting your disabled youngster through this important transition into adult life, check out our Preparing for Adulthood webpages

Rachel Ramsden from Teignmouth in Devon and Sophie Morris from Bushey, Hertfordshire are 2 of 18 runners getting ready to get, set go on 21 April at this year’s London Marathon.

An amazing commitment, we caught up with them to find out what inspired them to take part in the London Marathon for Contact.

39 year old Sophie, a chartered tax consultant, was inspired to run and raise vital funds for Contact after hearing about her friend’s experience caring for a child with complex needs.

Marathon runner Sophie

Sophie says: “Contact seemed like the perfect charity for me to support by running the London Marathon. I took up running two years ago and through it met my good friend Angela whose son Thomas has complex needs. Angela’s family has been supported by Contact for many years and on our runs she told me more about the challenges she faces as the parent of a disabled child – and the support Contact has given her to help overcome them.

“Talking to Angela really inspired me to take this challenge on. I know that thinking of Thomas’ smiley face will easily get me across the finishing line!”

If you’d like to donate and help Sophie smash her fundraising target please visit her JustGiving page.

Third marathon run for Rachel

43 year old medical secretary Rachel who is from Teignmouth told us:

“I’m a working mum with two children. My youngest son, Harvey, is 8 years old and is autistic. He is also non-verbal and has learning and developmental disabilities and needs help with all aspects of self-care. He is my world!

Marathon runner Rachel and her son Harvey

“I wanted to raise money and run this year’s London marathon for a charity that understands the challenges families like mine face when their child has additional support. This will be my third marathon and I am determined to come in under 5 hours so have been training really hard.”

You can donate to help Rachel’s fundraising efforts by visiting her JustGiving page.

Kaya Korablina from Contact’s fundraising team says: “Running 26 miles is a monumental challenge and we’re incredibly proud and humbled by Rachel and Sophie’s dedication, hard work, training and fundraising to support our work. It really does make a difference and helps us to continue to provide vital support to families with disabled children up and down the country. That’s why we will be there on the day cheering and congratulating all of those running the London Marathon for us this year and their efforts to help us help more families with disabled children.”

Best of luck to you both from all of us at Contact!

Contact's Policy & Public Affairs Officer Imogen

Imogen, Contact’s Policy & Public Affairs Officer.

As Contact’s CEO uses a comment piece in the Express to urge the government against penalising disabled children for non-attendance, our Policy & Public Affairs Officer Imogen talks about her experience at school and why meaningful moments matter.

Earlier this year, the government launched a national campaign on school attendance, using the strapline ‘Moments Matter, Attendance Counts’.

The campaign is the latest tool in the government’s focus on school attendance. But in implying parents are keeping children out of school for every little thing, and an assertion that every moment of education missed will affect a child’s future, the campaign shows a lack of awareness of the reasons why many disabled children are often absent from school.

My personal experience – meaningful moments

Years before working for Contact as a Policy and Public Affairs Officer, I was a persistent absentee at school. Having been born with complex cerebral palsy, my attendance was never more than 66%. Hospital appointments, trials of new treatments and chronic pain meant that I spent a lot of my school days in bed unwell or engaged in therapy aimed at improving my quality of life in the future.

The most extreme example was when I missed the entirety of year five because I underwent multilevel surgery. This surgery allowed me to retain movement in my legs, so the year of rehabilitation it required was essential. In secondary school, I regularly missed days and weeks due to chronic pain. I soon learnt that when I did try to attend school in pain, I could not concentrate. I was better off staying at home and catching up on the work I missed once I felt better, which was easy with supportive teachers.

I am therefore painfully aware that the ‘Moments Matter, Attendance Counts’ campaign is flawed.

While school attendance is undoubtedly important, it is not the be all and end all. I dread to think of the additional pressure and stress my parents would have encountered because of my poor attendance if I were at school now.

Support-led approach to attendance

The government needs to revisit the Moments Matter campaign and make a very significant addition: Meaningful Moments Matter. There must be recognition that the quality of moments in education count, not just the number of moments. Sometimes moments missed from school may be essential for a pupil’s development and wellbeing.

At the same time, the government must follow a support-first approach when dealing with attendance. Emphasis needs to be placed on supporting children to catch up on time missed at school and ensuring that they have all the support they need when they do attend.

The government’s current focus on high attendance figures is resulting in schools refusing to send work home to pupils unable to physically attend. Many schools are now acting as the gatekeepers to education, rather than the givers of knowledge. This further penalises those who can’t attend and are already missing out on spending time with their peer group.

The lack of understanding around the school attendance is not limited to the current government. The Labour Party have announced that they plan to drive up attendance by offering free breakfast clubs in every primary school. There needs to be an overall culture shift in the approach to school attendance to support disabled children.

It was only with the help of supportive teachers who sent work home and agreed to catch me up on the work I missed when I returned to school that I was able to succeed in education. The government and any future government must revert to this support-led approach to attendance, rather the target of 100%.

Will you write a blog on attendance?

Over the past six months, our helpline has been receiving increasing numbers of calls from parents who are being negatively impacted by the current attendance policy.

I would like to hear from parents whose disabled children are unable to attend school. Please get in touch with Imogen.steele@contact.org.uk if you would like to write a blog sharing your personal experience of the current 100% attendance policy. Once you get in touch, we’ll be able to help you put something together. We’ll be sharing these blogs with all political parties in the hope of influencing future attendance policy.

Thank you for reading my blog.

Say hello to Alex Archer and Steve Minshull – two of 18 London Marathon participants running just over 26 miles to raise vital funds for Contact this year.

Alex from Clapham and Steve from Liverpool decided to run the London Marathon on 21 April for Contact because they’ve both seen the real difference Contact makes first-hand.

Alex says: “I’ve run a half marathon for Contact before, so the London Marathon seemed like the natural next step. It’s a cause very close to my heart as Contact has supported my family since my brother, who has additional needs, was young. We have been lucky to have so much support from Contact over the years and I firmly believe in the invaluable work Contact does to support and empower families like mine. I want to run this year’s marathon to give something back and raise money and awareness for this life-changing charity.”

Steve’s niece Hannah has a chromosome disorder called Jacobsen’s syndrome which means she has physical and learning disabilities as well as complex medical needs. Her condition was so rare that none of her doctors knew anything about it. Charity Contact was the only source of information they had on Hannah’s condition when she was first diagnosed. Steve says:

“I am delighted to be running the London Marathon for Contact, a charity close to my family’s hearts, thanks to the help they have given my sister and brother-in-law with their daughter Hannah. Hannah has just turned 18 and it feels like the perfect time for me to give something back and support this wonderful charity which supports families with disabled children. Many families with disabled children feel frustrated and ignored and can’t always access the services that they are entitled to. Contact provides an invaluable service supporting and signposting families in their quest for a better quality of life for their child. When we have a problem, Contact is the first place we go to for advice. Raising a disabled child whilst is extremely rewarding, can be stressful and hard at times. Knowing that Contact is there at the other end of the phone line or will respond quickly to messages makes things so much easier.”

Good luck Steve and Alex! We think you are both amazing and look forward to seeing you as run just over 26 miles of the Capital’s streets on Sunday, 21 April.

You can support Alex and/or Steve and give their fundraising target a boost by visiting their fundraising pages.

This Monday 1 April 2024, the National Living Wage rose from £10.42 to £11.44 (£13.15 in London).

While this is good news for some earners, yet again we are forced to raise concerns that more carers will be forced out of work as a consequence of the government failing to adjust other parts of the benefit system.

The maximum amount a carer can earn while claiming Carer’s Allowance – a vital support package for unpaid carers – goes up to £151 a week. That’s a maximum of 13 hours on the National Living Wage. In 2021, carers could work 14 hours a week, and in 2016, 15 hours. This represents a continual chipping away of parent carers’ opportunities to get back into the labour market.

The earnings limit of £151 is far too low for a carer working 16 hours a week on National Living Wage, who will now take home £183.04 a week. But someone must work a minimum 16 hours to be eligible for Working Tax Credit. A carer will lose this support unless they can make certain deductions from their income.

We are calling on the government to adjust the Carer’s Allowance earnings limit at the earliest opportunity to at least £183.04 or to scrap the limit altogether to allow unpaid carers who want to work the full means to do so.

On Sunday 21 April Bernadette in our business development team will be pounding the capital’s streets to raise vital funds for Contact at this year’s London Marathon.

Contact’s business development coordinator, Bernadette, is one of 18 people running for Contact this year. She says:

“When I heard there was an opportunity to run the London Marathon this year I was keen to find out more but wasn’t sure whether I’d actually be able to do it. But, having celebrated a significant milestone birthday this year, it seemed like the perfect time to challenge myself and to not only fulfil a personal accomplishment but to do something to support Contact too!

“The London Marathon aims to create an opportunity for participants “to have fun and provide some happiness and sense of achievement in a troubled world”. This really resonates with me. I enjoy running – but it’s fair to say I’m not a natural runner. I’ve run a couple of half marathons in the past, but the thought of doubling that distance is daunting. I want to show my children that if you set your mind to something, with determination and focus you can achieve it! I keep motivated with my training knowing that each step is helping to support families with disabled children. And, as an added bonus, fundraising has also provided an opportunity to raise awareness about Contact among my family and friends, some of whom have since benefitted from Contact’s services. So, I will embrace the experience, step out of my comfort zone, wear my Contact vest with pride and enjoy it as much as I can!”

Best of luck to all our runners this year!

Join us as we wish Bernadette and all our London Marathon runners the very best of luck!

Support Bernadette’s fundraising efforts.

Thinking about joining our team next year? Get in touch today by emailing fundraising@contact.org.uk

Find out about other ways to fundraise for Contact.

Last year, we told you about a research grant Contact has been awarded by National Institute for Health and Care Research (NIHR). We’re investigating what stops under-represented communities in the North West of England from accessing health care services.

Since then, we’ve been working in partnership with Alder Hey Children’s Trust, Edge Hill University and the North West National Network of Parent Carer forums ( NW NNPCF) to develop this work further.

We know that many disabled and neurodivergent children and young people from under-served communities such as Black, Asian and minority ethnic groups and Traveller communities have less access to healthcare and poorer health outcomes. They can face discrimination, disadvantage and exclusion and have less choice and control about their health care.

So far, research in this area has been limited. So this project offers a unique opportunity for us to work in partnership with community members to explore what could help improve access to healthcare for disabled and neurodivergent children, young people and their parent carers.

What progress have we made so far?

We are currently working with three communities – Gypsy, Roma and Traveller families, refugee and asylum-seeking families and parent carers with disabilities and neurodivergence – and community advisers to listen and learn more about their experiences of accessing health care for their children. So far, we have: 

What have we learnt?

Although the project is still in it’s early stages we have already learnt that:

The rules that govern when a young disabled person in education can claim Universal Credit are extremely complex . That’s why advisers from our Family Finance Team are inviting you to ask any questions you have about this at a special Q&A session on Thursday 18th January between 10am – 11.30 am on our Facebook Group.

How to join our Facebook group

Joining our Facebook Group is easy. Just answer a few simple questions to register and you’re in!

Join us there on Thursday 18th January from 10am-11.30am when our team of Family Finance advisers will be waiting to answer your questions. Put the date in your diary!

The Universal Credit rules

The benefit rules prevent most young people in education from getting Universal Credit. However, some disabled students can qualify for Universal Credit. This includes young people who either:

Get advice before claiming Universal Credit

Even if your child falls into one of these groups and can claim Universal Credit it’s not always a good idea to do so. This is because they will stop being treated as a dependent child and as a result any Child Benefit, Child Tax Credit or other payments that you receive for them as dependent child will stop.

Making a ‘credits only’ claim for new style Employment and Support Allowance

Contact recommends that disabled teenagers undergo a work capability assessment when they turn 16 to try to establish that they have a limited capability for work early on. Doing this can increase their chances of being able to claim Universal Credit at a later date if they either change courses or stay in non-advanced education past the age of 19.

But here’s the catch: if you simply ask the DWP to carry out a work capability assessment, they are likely to refuse. The only way to make sure an assessment takes place is by making a ‘credits-only’ claim for new-style ESA. Your child won’t qualify for the ESA payment itself, but the DWP will have to carry out a work capability assessment as part of the claims process and this may help them to get Universal Credit at a later date.

Can’t make 18 January?

We have lots of information about claiming Universal Credit for a young person, on our website.

We’re really happy to be recruiting for a new role to join our ambitious policy and campaigns team!

We’re looking for a Research, Policy & Public Affairs Officer (14 or 17.5 hours per week, home or office based).

The role is a fixed term contract for three years. The closing date is Monday 15 January at 10am. The hours per week are flexible and working term time is also available.

The role would be suitable for a parent carer wanting to take a step back into paid employment. We’ll offer training, so don’t let that put you off applying.

You can find more information about the role, job pack and application form on the Work for Contact section of our website.

Tips on completing application form

The section called ‘General experience and further information’ is the most important section.  We use this to decide who to interview for interview.