Children and young people in Leeds

Support for disabled children runs through a different system to adult social care, and it is easy to miss entitlements that sit in a different department to the one you are already dealing with.

The four routes worth knowing

1. An EHC plan

An Education, Health and Care plan is the strongest form of SEND support, because it is legally enforceable. It runs up to age 25 and sets out the support the council must arrange.

Anyone can request an assessment, including you, and you do not need the school to agree. Once you request it the council has 6 weeks to decide whether to assess, 16 weeks to decide whether to issue a plan, and 20 weeks to issue the final plan. Councils miss those deadlines routinely, and the deadlines are your strongest lever.

2. Short breaks

Councils have a duty to provide short breaks for families caring for disabled children. That can mean a support worker for a few hours, a holiday club, a weekend scheme or overnight care.

Ask children’s disability services directly, and ask for the council’s published short breaks statement. Every council must have one, and it sets out what is available locally.

3. Disability Living Allowance for children

DLA for under-16s is not means tested. The care component can start from three months old and mobility from age three.

It also acts as a gateway. Getting it can unlock Carer’s Allowance for a parent, extra disabled child amounts in Universal Credit, and a Blue Badge.

4. A Disabled Facilities Grant

Up to £30,000 in England for adaptations, and crucially not means tested for a disabled child under 18. The parents’ income is ignored entirely.

Families routinely never apply because they assume they earn too much. Check it with our DFG checker.

Your own assessment as a parent carer

You have a right to a parent carer’s needs assessment under the Children and Families Act, separate from any assessment of your child. It looks at the impact of caring on you, and it can lead to practical support, a direct payment or short breaks.

Very few parents ask. See our carer’s assessment checker.

Transition to adult services

The handover to adult social care at 18 is where support most often falls apart. It should start at the year 9 EHC plan review, around age 14.

Ask for a transition assessment early and in writing. An EHC plan can continue to 25, and does not automatically end at 18.

Choosing a provider

CQC registers services for children separately, and the report will say what ages a service supports. Ask:

• What experience do staff have with this specific condition or need?
• How do you communicate with a child who is non-speaking?
• What training do staff have in the specific support required, such as feeding, seizures or moving and handling?
• How do you keep the same staff around a child, and what happens when someone leaves?