Our Campaign Manager, Stephen Kingdom, writes about why the “Three Pillars” – our call to government to address the crisis in support for families with disabled children – matter more than ever.
Our research over the course of the Covid crisis – and the personal stories families have told us – have shown the devastating and disproportionate impact that the pandemic has had on disabled children and their families. Children have seen their conditions deteriorate as they have missed vital therapies and other support; families have been left exhausted and isolated as they have cared for their children without the formal and informal support they need; and parents say they have been left abandoned and forgotten.
But parent carers have also emphasised that we cannot just look at the impact of the pandemic in isolation. It came on top of a system that was already in crisis; that was already failing to deliver the support disabled children and their families need and to which they are legally entitled. Over recent months, the Disabled Children’s Partnership has focused on calling for a dedicated Covid recovery plan for disabled children and their families. But whilst that is vital, just returning to the pre-pandemic norm would be woefully inadequate and fall far short of the government’s stated ambition to “Build Back Better”. We need action now to address the pre-existing underlying systemic failures.
Back in 2019, I wrote a blog setting out three ‘Pillars’ to deliver better support and care for disabled children and their families. Those pillars remain as needed now as they were then. They are set out in full below, but in summary they are: prioritise disabled children; review and reform the complex and opaque system; and invest in services. The good news is that the government has the opportunities coming up – including in its long awaited SEND Review; through the Independent Review of Children’s Social Care and in the autumn’s Comprehensive Spending Review – to build the three pillars. They must do so without delay.
Make disabled children a priority
Disabled children to be made a priority across government, at both national and local level; and the Government to 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.
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, and 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.
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 £2.1 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.