Category: Campaigns

We were blown away by the incredible support we received from families throughout our successful Out of Energy campaign.

Our campaign called on the government for targeted support for disabled households to help with soaring energy bills. Last week, the Chancellor unveiled new measures to help UK households, including support for disabled households. 

Parent Emma is part of our campaigner network and worked with us to make this happen. She said: “I am so honoured to have been part of the Out of Energy campaign. I’m so happy speaking out in the media, and your campaign has made such a positive change for disabled children. You’ve done an amazing job. Thank you again.”

But our campaign doesn’t end here. Last week, the Chief Executive of Ofgem Jonathan Brearley said the energy price cap could rise to £2,800 in October. However, our research found that many families with disabled children are already facing bills of that size.

Without better support now and in the longer-term, families could find the gains from the government’s latest support package wiped out.

Families making the case for more support

Thousands of you showed your support for our Out of Energy campaign by signing our letter to the Chancellor. Many of you spoke on TV, radio and to newspaper journalists, highlighting why disabled households have unavoidably high energy costs.

Parent carers like Amy Jonson from Cardiff. Amy is a sandwich carer for her elderly mum and son Jayden, aged 10, who has Cerebral Palsy. She says she has always been good at budgeting, but is struggling to manage these unprecedented rises in energy costs.

Amy says: “My son has cerebral palsy and needs electrical equipment for his care and to take part in everyday life – electric hoists, bed, wheelchair and communication devices. We would be at a complete loss without this equipment.

“On top of that Jayden, can’t regulate his body temperature. When he is home and it’s cold, we need the heating on. That means a third of my income is goes on energy costs. There is very little help. The predicted costs in October could be very serious for us and many other families in a similar situation.”

There is nothing more to cut back on

Kerry Richmond from Suffolk is mum to Oscar, aged 12, who has a rare genetic disorder and complex health needs. She told us: “Equipment we have plugged in or on charge all the time include a hoist and chair lift, standing frame, feeding pump, SATs monitor and Epilepsy monitor. Oscar has an electric changing bed so a spare battery is on charge for that. Two years ago we were paying £250 per month, and that’s been creeping up and up.

“Our bill for February-March this year was £436. It’s frightening, and we are really worried. Oscar needs a daily bath. We are washing him in what feels like a puddle, because we dare not fill the bath too full. There is nothing more we can cut back on.”

Join our campaign network and help us call for longer-term support

We are pleased that the Chancellor has finally acknowledged the extra costs disabled households face.

But families we support still face worrying times, and one-off measures won’t be enough in the longer term. There’s a danger that any gains made could be wiped out if a family with a disabled child has to claim Universal Credit, which for 100,000 families will mean being worse of by more than £1,800 a year as a result of the 50% cut to the lower child disability addition.

We will continue to call for continuing financial support for families with disabled children. Join our campaigner network to be the first to hear about opportunities to take part in our campaign activities.

Help with energy costs

If you need advice on paying your fuel bills check out our webpage on help with utility costs.

Through our Out of Energy campaign, we have been speaking to and hearing from families up and down the country increasingly desperate about soaring energy bills.

Over 3,000 have signed our letter backing our calls to government to give more financial help to disabled households, disproportionately affected by higher energy costs. We thank each and every one of you for your support. If you haven’t yet had a chance to sign, there’s just a week or so left before we will deliver it to the Chancellor Rishi Sunak at Number 11 Downing Street, so take action today

We need life-saving electrical equipment

Noor Fatima is mum to Aminah, aged 8, who has Spinal Muscular Atrophy (SMA). Aminah  needs a lot of electrical equipment essential for quality and safety of life, including a lift in the family home, a CPAP machine, electrical bed and wheelchair.

Noor, who works for the NHS, said: “Both me and my husband work and we are just about holding it together. I feel so disheartened at how hard it is. Our energy use is high, because we need gadgets and life-saving equipment to help Aminah. There’s literally nothing we can cut back on. It’s not just energy, everything is going up. I’ve noticed an increase of £20-£30 in our weekly shopping bill. I find it scary that we are not being offered any help.

“I would encourage families to sign Contact’s letter, there’s not long left before they deliver it to Downing Street, so make your voice is heard while you can.”

Yesterday the Chief Executive of Ofgem Jonathan Brearley said the price cap is expected to rise to £2,800 in October. Contact’s Out of Energy research found that many families with disabled children are already facing bills of that size.

Costs don’t change with the weather

Una Summerson, Head of Policy at Contact, said: “Even during this warmer weather, families with disabled children have high energy costs. Those costs are constant and don’t change with the weather.

“Families can’t wait till October for the government to act. They need targeted support now. Disability benefits need to be raised in line with current inflation and the energy rebate should be made a non repayable grant for disabled households. We’d also like to see the Warm Home Discount scheme available to more disabled households.

“And that’s the message we will be delivering to the Chancellor in the next few weeks, so show your support for the campaign today.”

Sign our letter calling for financial help for families today.

A fundamental shift in children’s social care services in England is needed to better support families and vulnerable children, a government-commissioned review has found.

Josh MacAlister’s independent review of children’s social care services, the findings of which are published today, also called for an immediate injection of additional funding.

“Change is now both morally urgent and financially unavoidable. We have a stark choice: keep pouring money into a faltering system or reform and invest to improve people’s lives and make the system sustainable for the future.”

Josh MacAlister, author of the review report

“What we need is a system that provides intensive help to families in crisis, acts decisively in response to abuse, unlocks the potential of wider family networks to raise children, puts lifelong loving relationships at the heart of the care system and lays the foundations for a good life for those who have been in care,” the report said. “What we have currently is a system increasingly skewed to crisis intervention, with outcomes for children that continue to be unacceptably poor and costs that continue to rise.”

For these reasons, the review argued that a “dramatic whole-system reset” is now unavoidable.

It recommended that this be matched with a five-year funding injection £2.6 billion, including roughly £2 billion to build a new ‘Family Help’ system (replacing the existing ‘targeted early help’ and ‘child in need‘ support routes) and £253 million to ensure the country has enough skilled social workers.

Responding to the report, education secretary Nadhim Zahawi said the government is ready to meet the challenge set out by the review and promised to set out plans for “bold and ambitious change” in the coming months.

DCP’s reaction to the final report

The Disabled Children’s Partnership, which Contact’s CEO Amanda Batten chairs, said: “We welcome the review’s call for a reset of the social care system and for an immediate injection of additional funding. We asked the Care Review to take on board our longstanding campaign for the Law Commission to examine the complex and patchwork legal framework for services for disabled children, in order to strengthen and simplify it. We are really pleased that they have adopted this recommendation and we call on the Government to respond.

“We are also pleased that the report recognises that the needs of disabled children and their families differ from other children and families accessing social care – and that disabled young people’s transitions into adult services need to be improved. The review highlights that more needs to be done to strategically integrate education, health and social care for disabled children.

“We were disappointed, however, that the review did not make more specific recommendations to ensure that families living with childhood disability can access the support they need from social care to be able to live a life which is as fulfilled as possible. This action is urgently needed – our research has revealed an annual funding gap of £573 million for disabled children’s social care, and 43% of families with disabled children have to wait over a year to get respite care.

“The recent Special Educational Needs Green Paper said little about social care because the government was awaiting this review. The review now puts the ball back in the court of the Green Paper programme. It is vital that, in taking forward its SEND reforms and its response to this review, the government takes concrete steps to improve the support provided to disabled children and their families.”

The Children’s Commissioner for England has opened a call for evidence as part of a major review into modern family life in Britain.

The aim of the Family Review is to explore how families understand themselves, how they can best be supported, and whether public services meet the needs of families as a unit, rather than as individual members. The review is a recommendation of the Commission on Race and Ethnic Disparities.

The Children’s Commissioner wants to gather views from individuals and organisations. We will be submitting evidence as providers of services for families with disabled children and as a researching organisation into family lives.

If you’d like to share your personal views and experiences, you can do so on the Children’s Commissioner’s website.

The call for evidence closes at 11:45pm on Friday 27th May 2022.

42% of parent carers couldn't afford any heating last winter

UK households with disabled children fear £3,000 energy bills from April will worsen their child’s condition, our new #OutofEnergy research, published today, has found.

Average annual energy bills for these households were £1,909 in the last 12 months. That was already £600 more than the average household bill.

And as energy prices rise, we have huge concerns about how families are going to cope.

The Chancellor failed to recognise the huge extra costs of disabled households in his Spring Statement. We are now calling on him to put this right.

Our key findings

In our survey of 5,499 families in March 2022:

“My son has multiple machines on charge everyday – sats monitors, suction machine, profiling bed, feeding pump, neb machine, air purifier, lights are on day and night as we have carers. I just can’t afford to carry on paying £300 per month, this is just too much. I don’t know what we are going to do.”

Parent carer

What we want

We’re calling on the government to:

We’ve written an open letter to the Chancellor calling on his government to do more to help disabled households with energy costs.

Add your voice to our campaign – sign our open letter now.

Yesterday, the Prime Minister launched the government’s energy strategy. And while long-term plans to increase wind, hydrogen and solar production are important, the strategy was silent on soaring energy bills.

One of our parent campaigners, Stephenie from London, spoke to Channel 4 News last night about her rising bills and fears about keeping her family warm as part of our Out of Energy campaign.

Stephenie is from London and has two disabled children – Sophie aged 4 and James aged 14.

Join our Out of Energy campaign

We know from our latest Out of Energy campaign research that families with disabled children are already paying £600 more for energy than other households. That’s before the unprecedented energy price rises this month.

At such a difficult and precarious time, we are dismayed that the government is planning to reduce eligibility to the Warm Home Discount Scheme, meaning 290,000 disabled people could miss out on the £150 grant next winter.

While we welcome plans to make getting the payment easier for low-income households most likely to be living in homes that are expensive to heat, this fails to recognise those households that have higher energy costs due to a disability or health condition.

Join our Out of Energy campaign to stop changes to the Warm Home Discount scheme.

A new investigation into Disabled Facilities Grants (DFGs) shows that there are long and growing waits for assessments and for adaptations to be completed in the homes of disabled children.

DFGs are grants to help with the costs of works to the home to make life easier, like installing a stair lift or building accessible bathroom facilities.

The Bureau of Investigative Journalism’s Disabling Homes project, found that families are turning to crowdfunding to pay for major adaptations to their homes, due to delays in getting the grants. Many have to live with reduced independence and dignity for years.

It backs up Contact’s #CountingtheCosts Decent Homes survey, which found poor housing is making disabled children’s health worse.

Inappropriate housing

Una Summerson, Contact’s Head of Policy, said: “This investigation reflects the findings of our Counting the Costs housing survey, which found that 41% of families with disabled children have a home that doesn’t meet their child’s needs and in many cases this is putting their child at risk.”

The BIJ’s investigation was shown on Channel 4 News last night. It featured a family from our Counting the Costs Decent Homes campaign.

Alexa Woodcock, whose 15-year-old son Finlay has cerebral palsy and is visually impaired, said: “We moved into a new house on 8 October.  I contacted the housing team to explain that we’d moved and that we didn’t have a stair lift, naively expecting support.

“I was told they were too busy and couldn’t assign an Occupational Therapist (OT). The bathroom is upstairs. During my son’s EHCP I discussed my concerns and my son’s OT organised a commode. For months my 15-year-old son had to go to the toilet in the kitchen and I carried him upstairs to shower him. I then had to bump him down the stairs on my knee. In February we thankfully got a stair lift, but we shouldn’t have had to wait for so long for something which is vital to the dignity and safety of Finlay and me. All the time, I was worried that if I hurt myself lifting him then I have no idea who will care for him.”

Alexa is trying to raise the funds needed to make significant adaptations so that Finlay can have the best home life possible. You can contribute to their GoFundMe here.

Need advice on housing?

We have information on our website on:

You can also find advice from housing charity Shelter in:

Or if you live in Northern Ireland, from Housing Advice for Northern Ireland.

Today chancellor Rishi Sunak set out the government’s plans to help families with the cost of living crisis in his Spring Statement. But there was very little help announced for carers and families with disabled children facing soaring bills.

Amanda Batten, Chief Executive at Contact, said: “Families with disabled children will be hugely disappointed with today’s Spring Statement. There was nothing to recognise the massive extra costs that disabled households face with their energy and other household bills.

“We know from our latest Out of Energy campaign research that families with disabled children are already paying £600 more for energy than other households. That’s before the unprecedented energy price rises coming next week. Families with disabled children are reliant on life-saving electrical equipment. It would be dangerous for them to cut back on their usage. They are anxious as to how they are going to cope with soaring bills.

“And there was nothing to alleviate those concerns today. At the very least we wanted to see the £200 energy rebate announced in February converted to a non-repayable grant for disabled households.”

The only support measure aimed at vulnerable families was an extension to the £500m Household Support Fund, which was launched in October 2021 to help households with essentials such as food, clothing and utilities. However, it is unclear how the scheme will operate in each local authority and we are concerned that some families may miss out due to varying eligibility criteria or application processes.

Amanda added: “Where is the help for families who are unable to get paid employment due to caring responsibilities? They contribute enormously to the economy by shoring up our NHS and social care sector, but there was nothing for them. The only reference to vulnerable households is in giving more to the Household Support Fund. But we know that discretionary grants are not a good targeted measure for cash-strapped families with disabled children, who are time-pressured.”

Join our #OutOfEnergy campaign

We know that families with disabled children already pay £600 extra on energy costs compared to all households. A third of respondents to our Counting the Costs survey said they have gone without heating in the last 12 months — and as energy prices rise, we have huge concerns about how families are going to cope.

Contact’s new Out of Energy campaign is calling on government and energy companies to help families with disabled children with their higher energy costs. Find out more about what we’re asking for and help us take action via our campaign page.

Advice from Contact

Our advisers have put together a list of schemes, grants and tips to help families access financial support and reduce their energy use.

Help with utility bills 

There is help available so make sure you are getting everything you are entitled to. 

Energy saving tips 

It is worth checking to see if you can decrease the amount of energy you use

Financial help 

If you are struggling with finances and debt, try our online benefits calculator, use our online grants search or read our list of 6 things parent carers can do now to ease the cost of living crisis.

Get involved in our new Out of Energy campaign by joining our ‘Tweetathon’ in the run-up to the Chancellor’s Spring Statement this Wednesday (23 March). 

Simply use our tweet template to remind your MP about the need to help disabled households with their higher energy costs. 

Join #OutofEnergy campaign

We know that families with disabled children already pay £600 extra on energy costs compared to all households, and that’s BEFORE bills soar in April.

This might be due to life-saving equipment powered by electricity or extra washing due to continence issues. Some disabled children are less mobile and get colder quicker. Others have health conditions that mean they can’t regulate their body temperature.

We are asking government and energy companies to develop a range of measures to help families with disabled children with their higher energy bills:

Take action and tweet your MP today 

We’ve made tweeting your MP easy – just go to our Take Action page and use our ready-made tweet!  

All you need to do is type in your details and we will automatically identify your MP’s Twitter profile and add it to the tweet template. 

Need help with your utility bills?

There is help available so make sure you are getting everything you are entitled to. 

It is also worth checking our energy-saving tips to see if you can decrease the amount of energy you use

And if you are struggling with finances and debt, try our online benefits calculator or our online grants search

Help us bring down soaring energy bills for families with disabled children: campaign banner

We want to find out more about how rising energy costs are affecting families with disabled children.

Please take our survey and tell us your experiences.

The survey takes less than 10 minutes to complete, and there is a chance to win a £100 voucher if you complete the survey by Monday 21 March.

Your answers will help us call on government and energy companies to help families with disabled children with their higher energy usage.

Why are we asking you to take this survey?

We know that families with disabled children often experience higher energy costs. This might be due to specialist equipment powered by electricity or extra washing due to continence issues. Some disabled children are less mobile and get colder quicker, and others have health conditions that mean they can’t regulate their body temperature.

The cost-of-living package announced in February 2022 was welcome, but none of the measures recognised the higher energy costs facing disabled households. We at Contact are campaigning on a range of measures aimed at helping families with their higher energy bills, but we need your help to make a stronger case for change with government and energy companies.

Thank you very much for your help with this important survey.

Advice from Contact

Help with fuel bills 

There is help available so make sure you are getting everything you are entitled to. 

Energy saving tips 

It is worth checking to see if you can decrease the amount of energy you use

Financial help 

And if you are struggling with finances and debt, try our online benefits calculator or our online grants search

Yesterday the Children’s Commissioner estimated that 1.8 million children are persistently absent from school.

Contact knows from calls to our helpline that there is a sizeable number of children with SEND who are not in school or only there part-time. And we have seen an 8% increase in calls to our SEN helpline on attendance issues in the last six months compared to the same period last year.

Children with disabilities and health conditions have historically had more absences for a number of reasons: health issues, lack of support in school, waiting for a suitable school place, waiting for a first or updated Education, Health and Care Plan (EHCP), as well as being subject to higher rates of exclusion and illegal exclusion.

Severe absence of SEN pupils triple the rate of other pupils

But the pandemic has added to this. A report by the Centre for Social Justice, Lost but not forgotten, found that in Autumn 2020, the rate of severe absence for pupils on SEN support was close to triple the rate of pupils with no identified SEN.

Amanda Batten, Chief Executive of Contact, said: “Attendance issues for disabled children is not new, but it has certainly worsened. The disruption of lockdowns, as well as children told to shield for many months, has had an impact on the school attendance of children with disabilities and health conditions.

“There are some children shielding until they have their second covid jab in April. For those that are back, there are children still on part-time timetables. Children with autism who struggled with changes to routine, are continuing to have difficulty getting back into a normal pattern of school. And children with health conditions have found it physically challenging to manage a full day at school after so long off.

“In many cases what is needed is urgent access to therapies, and mental health support and quick processing of assessments of need, to enable children to get back into a normal school routine.”

Increase support to help children back into normal school routine

Contact knows of families who deregistered their children from school due to shielding. Some deregistered siblings of shielding children, to protect them.

The number of families with disabled children choosing to home educate or feeling they have no choice but to home educate due to lack of suitable provision, also rose during the pandemic.

We are hearing from more parents being threatened with fines due to their child’s poor attendance.

The Children’s Commissioner has today called for local authorities to keep a better record of children who are not attending school. Dame Rachel de Souza said urgent action was needed to identify the children most at risk, and the reasons why they miss school.

Amanda Batten added: “Children with SEND experienced disruption to and absences from education long before the pandemic. Sadly this has worsened and we must ensure that the support they need to get them back into school routines is available.”

Family experiences

“My son has been diagnosed with ADHD and anxiety and has dropped to 80% attendance. They are threatening with fines. My son is being failed by the system and everything is such a fight. The school are happy to send him home every time he has a panic attack.”

“My daughter was shielding until her covid vaccine, her younger brother is ASD and needed to stay home to keep her safe. The local authority were adamant he should be in school. It was incredibly stressful.”

“I’ve been waiting since last July for my daughter’s EHCP to be updated.”

“My daughter, 14, been to school maybe 6 times in 2 years. System has completely failed her. No help or support. Been to a tribunal and still got nowhere.”

Help and advice on attendance issues

We have advice on absence from school, going back to school after absence, information about fines for non attendance and more.

Black children are 10 times more likely to be referred to CAMHS via social services and youth justice teams rather than through the GP compared with White British children, according to a major new NHS report. 

The “stark” discrimination and inequalities Black and minority ethnic adults face in mental health service are reproduced in children’s services, the review of race inequalities in healthcare concluded.

The Rapid Race Review called for critical action from NHS England and NHS Digital to address the discrimination. 

Evidence reviewed by the team showed Black people and other minority ethnic groups face harsher treatment, including being more likely restrained in a prone position or put in seclusion when detained on psychiatric wards. 

People from Black and other ethnic groups were also less likely to seek help from mental health services for fear of discriminatory treatment. And their GP is less likely to refer them for psychological therapies. 

Discrimination is mirrored in children’s mental health services. 

Two large studies of CAMHS referrals by Edbrooke-Childs (study one  and study two) the team reviewed shows young people from ethnic minority backgrounds are less likely to be referred through voluntary routes like the GP.

The review, commissioned by the NHS Race and Health Observatory, also highlighted discrimination in neonatal and maternal healthcare as well as digital health, genetic testing, genomic sequencing and in the NHS workforce. 

In maternal healthcare, the team found “negative interactions, stereotyping, disrespect, discrimination and cultural insensitivity leaving some ethnic minority women feeling ‘othered’, unwelcome, and poorly cared-for.”  Researchers reviewed 178 studies published in the last decade to assess the evidence of ethnic health inequalities and set out recommendations for closing the gap.

A new survey shows that families with disabled children are spending huge amounts of their savings paying or fighting for support which they are entitled to for free.

That’s according to a new survey by Let Us Learn Too and Disabled Children’s Partnership (DCP) which shows families are paying a #DisabilityEducationTax. Key statistics from the survey include: 

Stephen Kingdom from DCP said: “Families are having to fight a system that should be there to help their children. They shouldn’t have to use their savings.”

Hayley Harding, the co-founder of Let Us Learn Too, said: “We’ve heard from families who had to sell their home.”

The survey forms part of DCP’s Count Disabled Children In campaign, which is encouraging families to write to leaders of their council asking them to prioritise disabled children as they set their 2022-23 budgets. Support the campaign by emailing your local council leader.

Contact is a leading member of DCP and our Chief Executive chairs the partnership, which is made up of 90 disability organisations.

The government has today announced £30 million for short breaks for families with disabled children in England. This follows a long-running campaign by the Disabled Children’s Partnership, of which Contact is a lead partner.

Alongside the £30million for short breaks the government has also announced £18 million more for supported internships.

Our campaign has been heard

Amanda Batten, Chair of DCP and Chief Executive of Contact, said: “This announcement finally shows that the government has acknowledged that the system of support for families with disabled children is not good enough. We are glad that our campaign has been heard, which is down to the 1,000s of families emailing their MPs, signing petitions and filling out surveys as well as parents and young people speaking to ministers and policy makers at events. We are also extremely thankful to the Sun for their help leading the #GiveItBack campaign.

“Of course, this additional funding will not solve all the problems that families face, after many years of cuts to services. But it is an important step, and we hope to build on this to make the case for more dedicated funding for disabled children and their families.”

Short breaks are vitally important to families

Lots of research shows the fundamental importance of short breaks to the wellbeing of families with disabled children. They enable parents to have a break from caring and spend time with siblings. And they allow disabled children to do fun activities with their peers. This is more important than ever as families report being exhausted and more isolated than ever following lockdowns, school closures and a reduction in services due to the pandemic.

Watch this video of Amanda Batten responding to the news.

The Disabled Children’s Partnership (DCP) is a wide network of big and small organisations, thousands of parents, young people, parliamentarians, newspapers and more.

Advice and information on getting a short break

Take a look at our information on short breaks – a way of getting a break from your caring responsibilities.

The energy price cap which most families’ bills are now based on is predicted to go up by 50% in April.

Ofgem is due to unveil the price cap rise for 15 million families on 7 February, which will come into effect on 1 April. The rise is due to increased costs around the world for energy, and it is estimated that it could add £600 to bills. But Martin Lewis, Money Saving Expert believes most are better sticking with the price cap.

Families with disabled children often have higher energy costs

Over the last 10 years Contact’s Counting the Costs research has highlighted the challenges many families with disabled children face heating their homes.

Families with disabled children often experience higher energy costs due to equipment powered by electricity and extra washing due to continence issues. Some disabled children are less mobile and get colder quicker and others have health conditions which mean they can’t regulate their body temperature.

Special tariff for households with disabled children needed

Una Summerson, Contact’s Head of Policy, said: “For parents with children who have health conditions seriously impacted by the cold, or respiratory issues impacted by damp – the anxiety and the consequences of rising energy bills are more severe. Upsettingly, a third of families who answered our Counting the Costs survey last summer said that pressure on household finances was negatively affecting the health of their child. That’s why we are calling on the government and energy companies to introduce a special tariff for households with sick and disabled children due to rising bills.”

Help with fuel bills

There is help available so make sure you are getting everything you are entitled to.

Energy saving tips

It is worth checking to see if you can decrease the amount of energy you use.

Financial help

And if you are struggling with finances and debt try our online benefits calculator. Or our online grants search.

The Disabled Children’s Partnership (DCP) has today launched a new campaign calling on England’s local authorities to use extra money in their budgets to invest in vital services for disabled children – #CountDisabledChildrenIn.

DCP, of which Contact is a lead member, carried out an Opinium poll which shows public opinion is on the side of disabled children and their families.

The poll of public attitudes of 2,000 adults in the UK found that:

Amanda Batten, Chair of DCP and CEO of Contact, said: “Disabled children and their families will be heartened to hear that public opinion is on their side. We are urging local councils to listen. They need to ensure that extra funding allocated in the Budget goes to respite, therapies and other services vital to disabled children.

“And we are calling on parents to lobby their local councils to use the funding available to them to invest in disabled children’s health and care and #CountDisabledChildrenIn.”

Services have been decimated

Up until April 2022, local councils in England will be deciding their budgets for 2022-23, including how much to spend on disabled children’s social care services. DCP’s research throughout the pandemic highlighted how services vital to disabled children and their families have been decimated. This is taking a terrible toll with families reporting that their children’s progress has regressed and some are living with more pain.

At Rishi Sunak’s 2021 Autumn Budget, no dedicated health and care support for disabled children and families was announced. However, a total of £4.8 billion in additional government funding for local councils was released. As councils plan their budgets, we at the DCP are asking them to use some of this money to invest in disabled children’s health and care, correct years of underfunding, and give every family the support they are entitled to.

Amanda Batten added: “We know budgets are tight, but we are also clear there is an urgent moral and economic argument for councils to act.”

Get involved

E-mail your local council to urge them to invest in disabled children’s services.

Find out more about the DCP’s #CountDisabledChildrenIn campaign.

It has been nearly 20 days since the government’s vaccine committee recommended the Pfizer-BioNTech Covid jab for high-risk children aged 5-11 in the UK, but families are yet to hear of any roll-out plans.  

Contact is calling for an urgent update from the health secretary, Sajid Javid MP, as well as a swift roll-out of the Covid vaccine to high-risk children – many of whom have been shielding at home for the past 22 months.  

Una Summerson, Contact’s campaigns manager, said: “Thousands of families breathed a collective sigh of relief when the Covid vaccine was approved for high risk children aged 5-11 just before Christmas. Parents told us they couldn’t stop crying at the good news as their lives have been a “living hell” for almost two years.  

“Whilst we appreciate it is a very busy time for all those involved with the vaccine delivery programme, it is extremely disappointing that these families are still in the dark about when their clinically vulnerable children will have access to a jab. 

“All we have heard so far is that further NHS guidance will be made available ‘in due course’, while prime minister Boris Johnson said it would happen ‘later this month’. This lack of urgency falls short of the expectations of families whose lives have been on hold for months as the UK lagged behind other countries in authorising the vaccine for the 5-11 age group.

“As well as announcing a clear timetable for vaccination, officials must provide detailed information on how eligible children will be identified and invited for a jab in order to avoid a repeat of last year’s turbulent roll-out to vulnerable children aged 12-15.”  

Contact will continue to press NHS and government officials for greater clarity and will update families when we know more. 

Should I contact my GP?

We are hearing that some proactive GPs are compiling lists of high risk children based on Green Book eligibility and some are starting to book appointments.

Even if your GP surgery isn’t doing vaccines they should be able to confirm that your son has been identified as eligible and will get an invite.

This NHS letter confirms this

“Please note all GP practices will be asked to undertake local searches for 5-11 year olds in a clinical risk group and to help identify those who are a household contact of someone who is immunosuppressed in January regardless of participation in vaccination.”

This letter also confirms the service specification has been updated which covers GPs/local vaccination centres to vaccinate high risk 5-11 year olds.

The letter also says that children can in the interim get vaccinated off label so really no reason for any further delay in our view. 

Please email if you need further advice    

Contact is calling for urgent news from the medicines watchdog on plans to authorise the Covid vaccine to high-risk children aged 5-11 years olds. We are also urging the government committee on vaccines to make a speedy decision and issue guidance as soon as authorisation is granted.

There are 19,000 clinically extremely vulnerable (CEV) children under 12 in the UK who were told to shield at the beginning of the pandemic. That’s thousands of 5-11-year-old high-risk children who could have access to a Covid vaccine if they lived in another country.

Families feel ignored and back of queue

Contact is supporting families who are still shielding their child — 21 months after the pandemic began — and others whose children have been in and out of school depending on case rates locally. Many are desperate for access to the Covid vaccine for their child. They feel completely ignored and at the back of the queue following the latest booster programme announcement.

Una Summerson, Head of Policy at Contact, said: “This is not about the mass roll-out of the vaccine to 5-11-year-olds, it’s about allowing those at high risk of serious illness from Covid to be given urgent access. Countries including the US, Canada, Israel and many parts of Europe have started vaccinating 5-11-year-olds. Families of high-risk children in this country are asking why they are being denied access. It is an utter failure to consider the rights of some of the most vulnerable children in our society.”

Contact has written to MHRA, the medicines regulator, who responded to say they sympathise with the families’ situations but couldn’t give us a timeline of approval. We have also written to the JCVI about off-label guidance, but the UK Health Security Agency replied on their behalf not addressing our calls to make Covid vaccines available off label to this age group.

Sign our petition

We believe these delays are unacceptable for high-risk children and have launched a petition calling for access to be granted to them. Show your support today.