As if we're not already drowning in enough bad news about how disabled children and their families are bearing the brunt of council and school funding cuts, today there's fresh misery. The Disabled Children's Partnership (DCP) has revealed there is a UK funding gap of £1.5 BILLION for children's services for disabled children.
The DCP as you will hopefully know, is a coalition of 60 non-profit organisations, including us at SNJ. Its new economic research showing highlighting the investment shortfall and its consequences will be highlighted on tonight’s BBC 1 Panorama. The programme will be shown at 8.30pm on BBC1. If you miss it, you should be able to find it on BBC iPlayer here after the programme has aired.
"In the aftermath of the Alfie Evans and Charlie Gard cases, Panorama meets three extraordinary families who spend their lives caring for children with serious disabilities. The number of school-aged children with complex needs has doubled since 2004, but many families now struggle to secure the help their children need in the face of limited resources.
Families let cameras into their homes to see what it takes to give their children the care they need on a daily basis - sometimes it's a fight to simply keep them alive. Are we willing to do what it takes to give these children a decent quality of life?" Fighting for my Child, Panorama
Tens of thousands missing out on support
There are over one million disabled children in the UK, 33% more than a decade ago. Yet fewer disabled children than ever before are currently getting support.
In November 2017, the DCP commissioned research by Development Economics to quantify what the current funding gap is for disabled children’s services. For example, services such as specialist equipment, speech therapy and short breaks. They concluded that an estimated additional £433.9 million needs to be allocated to disabled children’s social care services by local authorities and £1.1 billion by the NHS.
The DCP’s research shows tens of thousands of children with disabilities 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. Yes, really basic stuff that children in a developed nation like the UK should have a right to expect - and that the vast majority of children without disabilities already do. Imagine if they didn't - what government would get away with that? What government would dare to allow children to be so disadvantaged? Yet when it comes to disabled children, government - both local and national - allows such negligence to happen every single day. It's not asking for 'extras' or 'special treatment'. It's asking for a level playing field. It's saying we want our taxes to fulfil the needs of EVERY child, EQUALLY, whatever those needs are. Why should our taxes go towards paying for other people's children and not our own?
The Disabled Children’s Partnership is therefore calling on central government to pledge £1.5 billion a year to a Disabled Children’s Fund to plug the current funding gap and create a fairer Britain. This vital, urgent investment equates to just 0.2% of total government spending. Is that too much to ask?
What effect would this have?
By pledging to create a fund with an additional £1.5 billion, the government would:
- ensure disabled children and their families have the support in place when they need it, which will in turn prevent them from reaching breaking point.
- enable local authorities and the NHS to meet their statutory duties and improve the availability and quality of services
- support parents and young disabled children to work and succeed at school
Tonight’s Panorama will highlight the consequences of this – families at their wits' end having to go to court to fight for vital support and dealing with a system with limited and dwindling resources.
"Most parents of disabled children have to go through long exhausting battles to gain basic support. Some even have to resort to legal challenges through the courts. They are the lucky ones; many receive no support at all.
This is because health and social care services for disabled children are underfunded. This isn’t anything new but it’s getting worse. A consequence of this is that local councils and their health partners are forced to restrict the help available, often only providing support when families are at breaking point. The crisis in disabled children’s services has been bubbling under the surface for some time, but is now becoming intolerable." Disabled Children's Partnership report
In 2017 the Disabled Children’s Partnership launched its Secret Life of Us campaign to reveal the daily challenges facing families with disabled children and to call on the government to address the growing crisis in health and social care services through a
Disabled Children’s Fund.
Prior DCP research shows that most disabled children receive no regular support from outside their own close family, while just 1 in 10 parents believe health and social care services meet the needs of their disabled children. 90% of parents questioned in the earlier research (see report for sources of where to find this) said they had to fight to get the services they need. And of course, that doesn't necessarily include those families who were turned down for a social care assessment in the first place.
More disabled children than ever before
Why are there more children with disabilities? Apart from better diagnosis of conditions such as autism, advances in medical science means that more babies are surviving premature birth or birth complications but in many cases have complex medical needs. Additionally, children who have suffered serious illness now have a better chance of recovery, albeit being left with some kind of disability. Medical science is amazing, but you can't just save children's lives and then not support them to achieve the best they can for themselves. That's simply inhumane. But of course, supporting them takes money. Sometimes, lots of money.
But that's what is happening. But at the same time as medical is saving children or giving children a second chance, the number of disabled children who receive social care is reducing. Furthermore, government funding for early intervention services has been cut by almost £500 million since 2013 and is projected to drop by a further £183 million by 2020.
That's why it's so vital to support the work of The Disabled Children's Partnership to help reverse this trend and give our children a fighting chance of having the support - and the life - that they deserve.
- Visit the Disabled Children's Partnership website here
- Read the report here.
- Read about the secret life of Holly
- Read about how parents have lost confidence in disabled children's services
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- SEND Improvement: Supported internships without EHCPs, plus “incredible”, “unforgettable” disabled children’s short breaks - January 19, 2024
- Ombudsman report says councils are “standing in the way of support” by failing to offer personal budgets during the EHCP process - November 24, 2023