Three ‘Pillars’ to deliver better support and care for disabled children and their families

Thursday September 26, 2019

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.

In this blog, Disabled Children's Partnership (DCP) Campaign Manager Stephen Kingdom sets out three pillars on which to build better support for children and families.

It's been a turbulent few months in the country, with the Brexit deadline approaching and a possible election looming into view. It is easy to forget, therefore, that there are other things going on.

For the DCP, that means continuing to campaign for better support for disabled children and their families.In the midst of the recent political drama, there have also been some important developments and announcements for disabled children and their families over the summer.

In June, we launched our new Give It Back campaign with The Sun, calling on the government to put back the £434 million missing from budgets for social care for disabled children. In July, the Commons Education Committee published a report on school funding, which described the funding for special educational needs and disability (SEND) as "completely inadequate."

And this was followed this month by a damning National Audit Office report which concluded that "the system for supporting pupils with SEND is not, on current trends, financially sustainable." At the same time, the Local Government Association reported a £1.4 billion - and growing - funding gap for children's services.

The Government has responded with additional funding for schools and for social care and with the announcement of a review of the SEND system. These are, of course, to be welcomed. But that welcome needs to be heavily caveated. The additional funding for schools includes £700 million for "high needs", but this is less than the projected shortfall and only guaranteed for one year. 

As for the social care, the increased funding needs to meet the well-documented pressures on adult social care; as well as child protection and children in care. It is doubtful that much, if any, of the increased funding will reach disabled children and their families. And whilst we are pleased to see the government has recognised the need to review how the system is working, it is action we need to address the crisis in support for disabled children and their families.

To this end, we have identified three pillars to underpin and ensure improved support for disabled children and their families. These will form our main campaigning calls for the next year:

Pillar one - Make disabled children a priority

Disabled children to be made a priority across government, at both national and local level, and the Government must appoint a Minister for Disabled Children.

At both national and local level, responsibility for the support that disabled children and their families need sits with a range of organisations. All too often, the needs of disabled children and their families are not the priority within those services; and no-one sees it as their responsibility to ensure that services join-up and meet the needs of families. 

This needs to change. The government should appoint a Minister for Disabled Children with clear responsibility, accountability and power across departments to make sure that the right support from health, social care, education and other services is in place for families. This arrangement should also be mirrored in local areas.

Pillar two - clarify rights and review the law

The government to work with parents to clarify the existing rights and entitlements and to undertake a review of the legal framework to strengthen and simplify it.

The existing law related to disabled children and their families stems from over 10 different Acts of Parliament, regulations and guidance which have developed over the past 50 years. It is difficult for parents to navigate, and it leads to different services and agencies shifting responsibility between themselves, with families falling between the gaps. The government must work with parents to improve guidance on the current system - so that it is easier for them to know their rights - and introduce reforms to make the system simpler, and rights and responsibilities clearer.

Pillar three - Address funding shortfalls and create a dedicated fund 

The government to increase funding for health and social care for disabled children to meet the current funding gap; and to introduce a new innovation fund to support joined-up working and early intervention. There is currently a £1.5 billion funding gap across health and social care support for disabled children and their families. The government must fill this funding gap as a matter of urgency.

To support longer-term sustainability, we are also calling on the government to set up an Early Intervention and Family Resilience Innovation Fund. This would support projects that transform disabled children's health and social care by fixing problems at the earliest point of identified need and by focusing on the family as a whole.

The Fund would initially support a vanguard of innovative service providers but with the infrastructure to upscale successful projects, leading to cashable savings, as well as long-term economic and social return. Projects would be robustly evaluated, and learning would be shared to ensure that what works is promoted and has a sustained impact on the lives of disabled children and their families.

Get involved

You can help support our campaign now by signing our open letter to the Chancellor asking him to give back the £434 million missing from social care budgets for disabled children.

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