Latest news and campaign updates from the Disabled Children’s Partnership.
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On 10 September, we held an on-line event for MPs and members of the House of Lords to launch our Then There Was Silence report. The event gave Parliamentarians a chance to hear directly from parents and young people about their experiences during the pandemic (and before). One of the parents who spoke has written a powerful and emotional blog about the event.
The pandemic has had a devastating impact on disabled children and their families. It has left them isolated and abandoned. Vital support has been reduced or stopped altogether. Disabled children have seen their conditions worsen. And this has all damaged the emotional health and well-being of all members of the family, including disabled children’s sibling.
Our research throughout the pandemic has highlighted this impact. Our new report (published 10 September 2021) – Then There Was Silence – brings this research together alongside new analysis and an evaluation of how the voluntary sector responded to the meet the needs of children and families. It draws on the experiences of countless families, through surveys and interviews, as well as information obtained through Freedom of Information requests and other research.
Locked Out: Digital Disadvantage of Disabled Children, Young People and Families during the Covid-19 Pandemic
A collaboration between KIDS and the Disabled Children’s Partnership, ‘Locked Out’: Digital Disadvantage of Disabled Children, Young People and Families during the Covid-19 Pandemic – published on 26 August – demonstrates how many disabled children, young people and their families experienced positives and negatives as digital became the main medium to access vital services, education and to prevent isolation. It explores how user led design and investment in digital services could provide equal access and be a lifeline for families for the future. Importantly, it illustrates that digital access is now essential and not a luxury.
In this guest blog, Hannah Dobbin, Policy Manager (Children and Young People) at Scope, explains why the government must urgently invest in a Disabled Children’s Innovation Fund at the next spending review. Amongst other benefits, an innovation fund will help identify and provide effective early support to children and young people who are at risk of poor outcomes to prevent problems occurring or getting worse. Read the blog.
On 28 July 2021, the government published its National Disability Strategy. Disappointingly, the strategy fails to address all the issues facing disabled children and their families, and in particular is silent on health and social care. Read our reaction to the Strategy.
Alongside our Left Behind report, we have published an open letter from parent carer, Maureen Muteesa. Maureen’s son Calvin, 15, has complex medical needs and learning disabilities. Like so many families, they have missed vital support and services during the pandemic and have been left isolated and forgotten. But, also like so many families, they were not getting the support they needed even before the pandemic. Maureen is writing to the Chancellor, Rishi Sunak, demanding that he invests in support for disabled children and their families; both to recover from the pandemic and to address the underlying failings in the system. You can help by adding your name to Maureen’s letter. Once again, we are extremely grateful to The Sun newspaper for their support in highlighting the realities of life for families with disabled children and for joining us in calling for increased funding. You can read their report here.
On 16 July, we published the final survey of our parent panel, together with Freedom of Information (FOI) requests from councils and health trusts. The report – Left Behind – shows that whilst the rest of the country slowly returns to normal, disabled children and their families are being left behind.
Independent Review of Children’s Social Care – “Case for Change”
On Thursday 17 June, the Independent Review of Children’s Social Care published its “Case for Change“. Their analysis shows a system under strain; that too often prioritises investigation over support; and which is in urgent need of investment and reform. This will be all too familiar to families with disabled children. You can read our reaction to the review here.
Our campaign manager, Stephen Kingdom, has written a new blog (11 June 2021) about why our pre-pandemic calls to government to transform support for disabled children and their families matter more than ever if the government really is going to “Build Back Better”.
Read our statement on the government’s education recovery plan. The government states that this package should ensure that extra support is available for every disadvantaged child. But the absence of therapies and health services has caused disabled children and young people to fall behind in terms of speech, communication, social and motor skills. If disabled children can’t catch-up on this support, they will not be able to learn.
The Disabled Children’s Partnership is calling for MPs from all parties to show their support for disabled children and families across the country by publicly signing up to become a ‘Disabled Children’s Champion’ – backing our #LeftInLockdown campaign for targeted COVID-19 recovery policies for the whole family. Click here to read more and see who has signed up so far. And you can use this link to ask your MP to sign up.
On 14 May, we launched new research that exposes that – despite new government messages and the lockdown easing – families are still missing out on vital therapies and health appointments.
This is still not good enough. We need those in power to know that disabled children can’t be left behind as we come out of lockdown. To help raise the profile of this issue, we have launched a new action asking people across the country to print off a sign, write why they are backing a recovery plan for disabled children and families and send it to those in power.
On 14 May, we published the findings of its latest survey on the impact of the pandemic of disabled children and their families. The survey took place in the first half of April, so after schools had fully re-opened and as the country moved to the next stage of lockdown easing. But despite this, and the government’s statements on prioritising services for disabled children, parent carers told us that many children and families are still missing the support they need. Six in ten families are still experiencing delays to health appointments to review and treat long-term conditions; therapies are still delayed for half of children; and both children and parent carers are more socially isolated than the rest of the population. You can read the report here.
On 11 May, Her Majesty the Queen set out the Government’s legislative programme for the next session of Parliament. Click here to read our reaction to it.
The DCP’s lead charities written an open letter to Education Secretary Gavin Williamson and Education Recovery Commissioner, Sir Kevan Collins. The letter asks them to implement a dedicated Covid-19 recovery plan for disabled children and their families.
On 29 March, we published the findings of our second parent panel survey. The report highlights how the pandemic has left disabled children and their families isolated, and the impact on the mental health of all members of the family. Read more about our findings here.
On 17 March, we launched a new campaigner action – asking you to ask your MP to write to government about the impact of the pandemic on disabled children and their families. For more information, read this blog from our new Campaign Officer, Aidan Smith. And you can go straight to the action by clicking here.
On 3 March, the Chancellor, Rishi Sunak, published his 2021 Budget. Disappointingly, the Budget said nothing about addressing either the long term problems with the system to support disabled children and their families, or the specific issues facing them during the pandemic. Indeed, the word ‘disabilities’ only appeared once in the 107 page ‘Red Book’ Budget document. Click on the link above to read our response to the Budget.
In January, we asked our Parent Panel about the impact of the third lockdown – and the cumulative impact of the pandemic – on them and their families. They told us of the devastating impact that this and the previous lockdowns were having. Read more about it – and our call for a funded recovery and catch-up plan.
Earlier, this year, we published “Left In Lockdown” – reporting on what parents told us about the impact of lockdown on disabled children and their families. In September and October, we carried out a further poll of parents to see how things has changed, and in particular how the return to school had gone. We are immensely grateful to the more than 3,400 parents who took the time to share their experiences.
In May, we asked parent carers what life in lockdown was like. And you told us in your thousands. Thank you again. The responses painted a very bleak picture. Because you told such a clear story, the DCP have been able to secure widespread media coverage and they have had constructive discussions with Ministers and government officials. There was even a question asked about the survey results at one of the daily government press conferences, and it was recently raised at Prime Minister’s Questions in Parliament.
But, of course, what matters is what is happening for children and families now. Have things improved? And what has the returned to school been like for disabled children?
To help get a feel for this, please take our quick poll (it’ll take around 5 minutes).
Have things changed for disabled children and their families as lockdown as eased. To try and find out, we asked a short series of questions on twitter at the end of July and start of August. This is what we learnt.
Our chair, Amanda Batten, has written an open letter setting out how we have been using what you told us to influence government, and the impact it is having.
More that 4,000 parent carers told us how lockdown was affecting their families. Overwhelmingly, you told us they felt locked out and abandoned by Government and by society, and are fearful for their own physical and mental health. Read more here
Tell us how the lockdown is affecting you and your family
Are you looking for information and guidance about coronavirus and what it means for your family? Need someone to talk to about your situation? Or just looking for some ideas for activities whilst you’re at home? We’ve pulled together a range of resources and details of helplines from across the organisations in the Disabled Children’s Partnership on to a single helpful page.
On 19 March, the government published the emergency law aimed at helping it tackle the COVID-19 crisis. We had a look at what it might mean for disabled children and their families.
On 11 March, the Chancellor of the Exchequer, Rishi Sunak, delivered his first Budget. Unsurprisingly, the Budget was dominated by the response to the Coronavirus outbreak. However, it was still disappointing that it made no mention of support for disabled children and their families, other than a very welcome commitment on Changing Places toilets.
You can read our response to the Budget here.
On 12 December, the public will vote in one of the most unpredictable general elections in recent times. We want addressing the crisis in support for disabled children and their families to be front and centre in the election campaign. On this page you’ll find more about our approach to the general election and resources to help you influence candidates in your area.
Update: read the results of the general election parental survey carried out by NDCS, SEND Community Alliance and ourselves.
Thank you to the more than 21,000 people who signed Vickey’s #GiveItBack open letter to the Chancellor. On 25 October, Vickey and her son Ollie travelled to Downing Street to hand deliver the letter. They were accompanied by DCP representatives Amanda Batten (our chair and CEO of Contact), Richard Kramer (DCP vice chair and Sense CEO), Tara Parker (WellChild) and Sun journalist Kate Jackson.
It’s not too late to add your name – the more people who sign, the more chance the government will act.
On 23 October, the House of Commons cross-party Education Select Committee published its long-awaited report into the 2014 SEND reforms. Whilst their report concludes that the reforms “were the right ones”, they are highly critical of the implementation of the reforms which they say “has been badly hampered by poor administration and a challenging funding environment in which local authorities and schools have lacked the ability to make transformative change.”
To make a real difference to lives of disabled children, the Government must make them a priority, including by appointing a Minister for Disabled Children; by clarifying and reviewing the rights and responsibilities within the system; and by ensuring there is sufficient funding for services for disabled children and their families.
Our campaign manager, Stephen Kingdom, has written a blog setting out the way to build better support for children and families.
The Sun has been named Media of the Year at the Sense Awards for its campaigning work for families with disabled children. The award recognised The Sun’s work with the Disabled Children’s Partnership on the Give It Back campaign. Read about all the winners at the Sense Awards here.
DCP response to the government’s spending plans
On 4 September, the Chancellor, Sajid Javid, announced details of the government’s spending plans for 2020-21, including additional money for schools and for social care. Commenting on the announcement, DCP chair Amanda Batten said:
“Whilst we welcome the additional funding for social care and for support for disabled children in schools, we are concerned that it will not be enough to address the problems faced by families today. A one year cash injection is simply a sticking plaster and will not solve the crisis in support for disabled children. Moreover, with the pressures on adult social care; on child protection; and on children in care; it is difficult to see how much, if any, of the increase in social care funding will find its way to services disabled children and their families. Currently there’s a £434m funding gap for care services for disabled children and that is why the 70 charities that form the DCP are calling on the government to urgently ‘Give It Back’.”
MPs call for a ten-year plan to fix the broken school and college funding system
On 19 July, the Education Select Committee published the report of its school and college funding inquiry. The report – which includes a chapter on special educational needs and disability funding – concludes that the system is broken and that there is insufficient funding for SEND.
The DCP welcomes the report and supports its call for a long-term plan. You can read our statement here.
Three families have gone to the high court to argue that the government’s current level of funding for SEN support in schools is unlawful.
Families from North Yorkshire, Birmingham and East Sussex instructed specialist lawyers at Irwin Mitchell to issue a Judicial Review into the legality of how the government provides funding for SEN to local authorities.
The case will be heard at a full two-day hearing in the High Court on 26 and 27 June. Read more here.
On 25 June, the Prime Minister announced a new package of measures to tackle the injustices faced by disabled children. However, the announcement made no mention of disabled children and their families. This is how we reacted to the announcement.
On 17 June, the Department for Education published the findings of its children in need review.
Whilst the DCP welcomed the review, we are concerned that it shows, once again, that most disabled children and their families are not getting the support they need. You can read our statement about the review here.
The Disabled Children’s Partnership (DCP) and The Sun have joined forces to launch a powerful new campaign – Give It Back.
Disabled children and their families are missing out on vital care and support as a result of government cuts, the DCP has found. This is harming children and families’ physical and mental health, breaking parental relationships and causing children to needlessly miss out on school or college.
DCP research published last year revealed a £434 million funding gap for social care for disabled children and their families. This new campaign asks everyone to join our call for the Government to Give It Back.
Parents take to the streets to call for better support for children and young people
On 30 May 2019, parents across the country will be marching to highlight the crisis in support for children and young people with special educational needs or who are disabled. They will be demanding that the government takes action.
Marches and rallies will be taking place in locations around the country. This is a wonderful grassroots campaign from parents who are seeing the system fail their children and are fed up with having to fight for the support they need. The Disabled Children’s Partnership is delighted to have the opportunity to help publicise their campaign.
The National Deaf Children’s Society – who are members of the Disabled Children’s Partnership – have helpfully pulled together details on where the events are taking place and how you can get involved here.
You can also see more on Facebook https://www.facebook.com/SENDNationalCrisis/ or on twitter @SENDcrisis
A report published on 1 May by the Housing Communities and Local Government Committee says that Children’s Services are at breaking point and need at least £3.1 billion more funding by 2025.
The report is yet more evidence of the growing funding gap for local authority services. The DCP’s own research published last year showed an annual shortfall of over £400 million for social care support for disabled children and their families. Welcoming the report, the DCP campaign manager, Stephen Kingdom, said “Funding for children’s services has reached crisis point. The Government must address this crisis in this year’s spending review, including ensuring sufficient funding for councils to be able to provide the support that disabled children and their families need and to which they are entitled”
Not only is the Housing Communities and Local Government Committee (see below) looking into local authority children’s services, so is Parliament’s spending watchdog, the Public Accounts Committee. We have also submitted evidence to this review, which you can read here.
This inquiry follows a report published on the 23 January by the National Audit Office on the Pressures on Children’s Social Care. Whilst we welcome this report highlighting the financial pressures on local authorities’ children’s social care services, we are very disappointed that it makes no reference at all to the challenges facing disabled children and their families.
The Housing Communities and Local Government Committee in the House of Commons is holding an inquiry into the funding and provision of local authorities’ children’s services. It invited written evidence to be submitted in December.
The Committee has now published the written submissions it received. You can read ours here.
NHS Long Term Plan
On 7 January 2019, the Government published its long term plan for the National Health Service.
We have put out a short statement reacting to what the plan means for disabled children and their families.
There are not enough services for disabled children and their families and across the country many of those that do exist are under threat from cuts. Children and families are missing out on vital help that enables them to do things other children take for granted like eat, talk, leave the house, have fun and attend school.
We want to make sure that the Government is fully aware of the need for additional funding for these vital services. Therefore, we are asking our supporters to help us make the case for more funding for disabled children by asking their MPs to write to the Treasury. Click here to create an email to your MP.
On 15 November, parents gathered at Nascot Lawn to mark its closure. This sad occasion marked the end of the parents’ brave campaign to save the centre.
Economic Affairs Committee – Inquiry on social care funding in England
2018 Budget – a missed opportunity
Today’s (29 October) Budget was a missed opportunity to address the crisis in health and social care services for disabled children.
Commenting on the Budget, Stephen Kingdom – Campaign Manager for the Disabled Children’s Partnership, said “The Budget included welcome additional funding for social care. But it was a missed opportunity to address the crisis in social care services for disabled children. Our research identified a £434 million funding gap for these services. It is essential that the Government uses next year’s spending review to close this gap and to create an early intervention and family resilience fund as set out in our Five Step Plan.”
You can read more about our Five Step Plan here
The Government has announced that this year’s Budget will be on 29 October. In advance of it, the Treasury invited the public to make ‘representations’ by 28 September. You can read what we submitted here.
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On 16 July, the Disabled Children’s Partnership published economic research showing a £1.5 billion funding gap for services needed by disabled children. This investment shortfall and its consequences was highlighted on the BBC Panorama programme ‘Fighting for My Child’.
We’re pleased that Worcestershire council have listened to parents and recommended that Ludlow Road respite centre in Kidderminster remain open into next year. However this still leaves an uncertain future for families.
Nascot Lawn latest: council decides not refer the matter to the Secretary of State
Hertfordshire County Council’s Health Scrutiny Committee met on 3 July. Among the items on its agenda was the decision by Herts Valleys Clinical Commissioning Group (HVCCG) to withdraw funding from Nascot Lawn, a centre that provides overnight short breaks for children with complex health needs. It was open to the council to refer HVCCG’s decision to the Secretary of State for Health and Social Care, but sadly they decided against doing so.
Stephen Kingdom, campaign manager for the Disabled Children’s Partnership says: “Members of the Disabled Children’s Partnership, alongside the families who have fought so hard to keep Nascot Lawn open, are utterly baffled by the county council’s decision not take more decisive action over the CCG’s decision to withdraw funding for the centre and refer the matter to the Secretary of State for a final decision – an option open to the council under local authority regulations.
“The CCG’s decision to stop funding Nascot Lawn needn’t have been the end of the matter if the council considered that this would not be in the interests of the local health service. It seems self-evident to us – and to parents – that closing Nascot Lawn is not in the interests of the health service in Hertfordshire, given the impact it will have on children with complex health needs and their families. The council have missed a real opportunity to stop the closure of a much valued facility that helps local families with some of the most severely disabled children get a short break from caring. It’s also a false economy because keeping Nascot Lawn open could have also saved the council and the state money in the long run. If families with disabled children don’t get the support they need they are more likely to reach crisis point –at far more cost to the council and state than the cost of keeping Nascot Lawn open.”
On Thursday 28 June, we published the results of our survey on the quality of health and social care services. We asked families whether they thought the quality of health and social care services in their local area had got better or worse over the last few years. We also asked whether they were aware of any specific plans to cut services in the future. Thank you to everyone who took part the survey. We got a really good response rate with over 1,500 surveys completed.
The picture painted by the survey is not a good one. Three-quarters of family members said health services in their area had got worse; nearly two-thirds said the same for social care services; and just under half of respondents were aware of specific plans to cut services. You can read the full report of the survey results here.
Department for Education Children in Need Review
The Department for Education is currently reviewing support and outcomes for children in need. The Disabled Children’s Partnership welcomes this review, and the inclusion of disabled children within it. However, we have two significant concerns about the scope of the review. First, it is only looking at educational outcomes: these are clearly important, but not they are not the only outcomes that matter to children and families. Second, under the Children Act 1989 all disabled children are ‘children in need’ and it is important that the review is not limited to those children who are currently receiving services.
The ‘call for evidence’ stage of the review ran until 1 July and we took the opportunity to set out our concerns to the Department. You can read what we said to them here.
Education Select Committee special educational needs and disability inquiry
The House of Commons Education Select Committee is holding an inquiry into special educational needs and disability. You can more about the inquiry here. As part of the inquiry, the Committee asked for written submissions. Here is what we have said to the Committee about health and social care services for disabled children.
On 12 June, the Children’s Commissioner published analysis by the Institute for Fiscal Studies on public spending on Children in England between 2000 and 2020.
More overnight short breaks services under threat
The Disabled Children’s Partnership has today (21 May) issued statements calling on Worcestershire County Council and North Yorkshire County Council to protect overnight short breaks services under threat of closure.
Herts Valley Clinical Commissioning Group (CCG) has voted on 10 May to close the Nascot Lawn centre for severely disabled children. This devastating news means that, despite parents’ victories in the High Court, this vital service will close. It is, however, open to Hertfordshire County Council to refer the matter to Jeremy Hunt, the Secretary of State for Health and Social Care, for him to decide.
Listen here to our campaign manager, Stephen Kingdom, talking to Bob FM about the CCG’s decision. The interview was recorded and first broadcast on 12 May.
Families fighting Surrey council’s plan to cut more than £20 million from services for disabled children have officially lodged a legal challenge against the decision.
Thank you to everyone who signed our short breaks petition. On 19 April, parents and members of the DCP delivered the petition to number 10 Downing Street. We await the Government’s response.
Despite parent opposition, Hampshire County Council formally recommended the closure of the centres in Aldershot and Winchester, which provide care to 35 disabled children with the most complex needs in the area.
Step two of our Five Step Plan calls on the government to ‘Review funding of short breaks provision for disabled children and families’. But what do we mean when we talk about short breaks?
We’re launching the next phase of the #SecretLifeofUs campaign with a five step plan to address the growing crisis in health and social care for disabled children. We want the Government to take steps to ensure health and social care services work for disabled children and their families.