From crisis to care: making social care work for disabled children

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Social care can be a lifeline for disabled children and their families.

All too often they are unable to access the support they need.

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  The social care system is not set up to support disabled children and their families.

Current laws prioritise child protection, with a lack of focus on providing disabled children with the care and support they need. There is no national threshold for local authorities to follow, meaning stark variation across the country.

• Over half of parents struggle to access support and services that meet the needs of their disabled child. 
• 40% of families who access social care support had to fight for it at tribunal so their child could get the support they need. 
• 17% of families have been waiting more than a year to be seen by social services.

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  There is a lack of understanding and prioritisation of the services disabled children need by policy makers.

The funding available for specialist services and commissioning across the country is inadequate and inconsistent, leaving some areas with no services at all.

• 61% of parents felt decisions made by their local authority were motivated by cutting costs. 
• Almost half of parents do not trust their local authority to provide the care and support their disabled child is entitled to. 
• Half of parents have had to top up or fund additional support for their disabled child themselves

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  Parents face stigma when accessing social care for their disabled child, particularly those from minoritised communities.

Parents are often shamed and blamed, rather than supported. Many are in fear of asking for help at all, for fear of having their child taken away.

• Over half of parents felt stigma around accessing support from social services for their disabled child. 
• 70% of parents and carers are losing sleep because they are worrying about a lack of support for their disabled child. 

What needs to change

We’re calling on the government to:

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  Change the law to create a simple and streamlined process for all disabled children to easily access the right support. A new legal duty to assess all disabled children should be set, and a national eligibility threshold should be established to ensure more consistent access to social care across the country.

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  Improve collaboration and training for professionals so parents don’t feel like the only experts in their child’s care. All local authorities should ensure a Designated Social Care Officer is available. They should provide specialist training and effective multi-agency working for professionals across care, health and education.

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  End the postcode lottery of care and patchy provision. Provide long-term, ringfenced funding for the services disabled children need and support commissioners with evidence and guidance of what works. Early intervention is key, and social care should be available as soon as a child’s support needs are established.

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  Make disabled children visible by counting them. More investment is needed in data infrastructure, to better understand where and when disabled children need support. This will mean local authorities can be smarter with the way services are planned, commissioned and funded.

“I’m terrified of hitting that crisis…I am a single parent. I can’t go under. It’s as simple as that. I simply can’t fail at this.”

Amir, parent