How can political parties end the postcode lottery of social care for disabled children?

A sense staff member working with a young person and supporting them to use a sensory toy

Many disabled children are not receiving the vital support they need. 

Despite being eligible for social care, disabled children are often deprioritised by an underfunded system that is struggling to handle competing pressures. 

Children’s social care is a broad area, covering children in care, safeguarding and exploitation, children in prison, as well as providing services for disabled children.

It is vital that the next Government recognises the importance of dedicated social care support for children with complex disabilities and their families.

Sense’s plan for change

As a charity, Sense doesn’t support any political party. Our priority this election is to make sure that disabled people, including the 1.6 million people with complex disabilities, are at the heart of what the next Government does.

Our manifesto sets out the seven key changes Sense wants to see every political party adopt.

So what does it say about children’s social care?

Sustainable funding for children’s social care services

It is widely acknowledged that the social care system is underfunded and lacking in resources. The system covers a broad range of needs and this means disabled children are often not seen as a priority.

In 2022, Sense research found that only 15% of parents of children with complex disabilities agreed that they have access to all the social care support they need.

In research by the Disabled Children’s Partnership[TM1] , only 1 in 7 parents reported their disabled child has the correct level of social care support.

The significant funding gap in disabled children’s social care means more and more children are losing out on social care support they deserve. There is currently a funding gap of £500 million in children’s social care services.

  • Sense is calling for the next Government to close the funding gap in children’s social care services and provide additional year-on-year ringfenced funding.

Simplify the complex legal framework

The current legal system around disabled children’s social care is complex. This means many families find it tricky to understand what support their child is entitled to.

Sense’s family engagement research found more than a third of families were reliant on Sense for information relating to securing support for their child.

Families should know their rights, and local authorities should know what is legally required of them. The current system allows for too much variation between different regions of the UK, as laws are interpreted differently in different areas.

The next Government must simplify the legal framework for disabled children’s social care, allowing families to access the support they need.

Disabled children represented in parliament

Disabled people have been left feeling like an afterthought by previous governments, and it is important they are effectively represented.

The next Government should introduce a dedicated Minister for Disabled Children in the Department for Education.

Disabled children in particular are often overlooked as part of a wider group, and families often feel invisible and ignored. Support is split across a range of services and children are not seen as a priority.

A joined-up approach across all services is needed to allow children and families to access the vital support they need. Implementing a dedicated Minister for Disabled Children would allow for a more tailored and focused approach to addressing challenges specific to disabled children.

A Minister for Disabled Children could also focus on the intersection between social care and special educational needs and disabilities (SEND) to facilitate more cooperative methods of supporting disabled children and their families. 

Sense is calling for the next Government to represent disabled children in parliament by appointing a dedicated Minister for Disabled Children.

Fair access to short breaks for families

Carers of disabled children do an incredible job, but providing round-the-clock care without any breaks is exhausting.

Right now, more than 65% of carers say they are burnt out or exhausted. Two thirds of parents of children with complex disabilities say they cannot access the respite care they need.

One way that carers can take a break is through accessing Sense’s short breaks. These events are a lifeline for families of children with complex disabilities, and allow carers an opportunity to take a break from caring whilst Sense’s expert team support their child.

The next Government must recognise the importance of carers accessing the respite care they need. The statutory guidance on short breaks for disabled children must be amended, to make access to short breaks equal across the UK.

The Short Breaks Innovation Fund must be expanded to all local authorities, and it should be unlawful for local authorities to set artificial thresholds for short breaks assessments. Long-term funding must also be provided for short breaks.

The next Government must ensure disabled children and their families have fair access to short breaks.

Prioritising early intervention and communication support

Children’s social care is a broad area, covering children in care, safeguarding and exploitation, children in prison, as well as providing services for disabled children.

This means whatever funding is provided is often stretched thin, and when support is provided, it is often only when families hit crisis point.

Early intervention is vital to ensure the right support is provided.

The next Government should support services to work together so that young children with complex disabilities and communication needs can access the right therapies and support. 

The next Government must prioritise early intervention and communication support for families of disabled children.

Ensure everyone can access family hubs

Families we support regularly tell us they are finding it challenging to access the children’s social care system, and to gain enough support to help them live their day to day lives.

In a survey by the Disabled Children’s Partnership, only 1 in 5 parents said their family received the support needed to enable their child to fulfil their potential.

In 2019, the government committed to rolling out family hubs across the UK. Family hubs are spaces designed to bring services together to improve connections between families, professionals, services, and providers.

Although these spaces have been effective, more work needs to be done to ensure they are accessible and inclusive to children with complex disabilities. Hubs should make sure they have the capacity and capability to support parents and carers with disabled children.

The next Government must ensure family hubs across the UK are accessible to all.

What next?

We want every political party to commit to Sense’s proposals for ensuring all children with complex disabilities can access the social care support they need, no matter where they live.

But, whatever happens, whoever is elected, Sense will be ready to work with the Government to put people with complex disabilities at the heart of the social care system.