Just Found Out Your Child Has SEND? Here's Where to Start

You’re sitting with a letter, or a phone call, or a word someone used at a meeting that sent you straight to Google at midnight. Maybe the word is autism. Maybe it’s SEMH, or ADHD, or “we think he needs an EHCP.” Maybe nobody has used any word yet but you’ve known for months that something isn’t right, and now a professional has finally said it out loud.

Whatever landed you here, the feeling is probably the same: a strange mix of relief that someone else can see it, and sheer overwhelm about what comes next.

You don’t have to sort the whole system today. Nobody does. The SEND framework in England covers education, health, social care, benefits, and legal rights, and it takes years to learn properly. Start with three things this week: talk to the school about SEN Support, check your child’s eligibility for DLA, and find your local SENDIASS. Everything else can wait.

Take a breath

You didn’t miss a deadline by not knowing this stuff earlier. The school can still act. The DLA form will still be there on Thursday. Your child’s situation won’t get worse because you took a day to absorb a diagnosis rather than filling in a form the same afternoon.

It’s okay to feel overwhelmed. It’s okay to feel angry, or scared, or quietly gutted, or all three before lunch. That’s not weakness. It’s what it feels like to love a child and want everything to be easier for them.

Three things to do first

Three things. Not thirty. Everything else on the SEND to-do list is real, but none of it is more urgent than these, and you don’t have to do them all today.

1. Talk to your child’s school

If your child is school-age, ask to speak to the SENCO (Special Educational Needs Coordinator). Every mainstream school must have one. If you don’t know who it is, the front office will tell you.

Tell the SENCO what you’ve noticed, or what a professional has said. Ask whether your child is on the Special Educational Needs (SEN) register yet. If they’re not, ask for that to be started. It’s the first step to formal support and it doesn’t require a diagnosis.

This is the bit schools sometimes fudge: they hint that they need to see a report, or wait for a specialist assessment, before they can do anything. That’s not what the law says. The school’s duty kicks in when your child has needs that are “additional to or different from” what other children get, and that duty exists whether or not anyone has put a name to those needs yet.

2. Check if your child is eligible for DLA

Disability Living Allowance (DLA) is a benefit for children who need significantly more help or supervision than a child of the same age without a disability.

DLA is not means-tested. Your income doesn’t matter. It’s based entirely on your child’s needs compared to a typically developing child of the same age.

A lot of parents and carers don’t realise their child qualifies. If your child needs extra help with personal care (washing, dressing, eating, medication, supervision for safety) or has difficulty walking outdoors, it’s worth checking.

When you’re thinking through DLA, ask yourself how much more you do compared with a parent of a child without any disability the same age. Think about personal care, supervision at night, behaviour support, and getting around outside. You don’t need a diagnosis to apply, and your income is irrelevant. The care component has no minimum age (babies can qualify); the mobility component starts at age 3 for the higher rate and age 5 for the lower rate.

DLA can also open the door to Carer’s Allowance, the Blue Badge, and extra help through Universal Credit (UC).

3. Find your local SENDIASS

SENDIASS (Special Educational Needs and Disabilities Information, Advice and Support Service) is a free, impartial service that every local authority in England must provide. It’s staffed by people who know the SEND system inside out, and their job is to help you.

They can:

• Explain your rights and your child’s rights
• Help you communicate with the school
• Attend meetings with you
• Help you apply for an EHCP assessment
• Support you through the tribunal process if needed

Every LA has one. Find yours through the Council for Disabled Children directory.

SENDIASS is legally required to be impartial. They’re funded by the local authority, but they’re required to operate at arm’s length and give you impartial advice. Save their number in your phone before you need it, because the moment you need it you’ll want it fast.

What comes next (but not today)

Once you’ve done the three things above, these are worth looking into when you’re ready. But none of them are urgent today:

• EHCP assessment - if your child’s needs are significant, you can request an Education, Health and Care Plan at any time. This is a legal document that sets out what your child needs and who must provide it.

• Health referrals - if your child hasn’t been assessed by a paediatrician, speech therapist, occupational therapist, or other specialist, ask your GP for a referral. Waiting lists are long, so starting early helps.

• Short breaks and social care - if you’re providing significant care for your child, you may be entitled to support from your local authority’s children’s services team, including short breaks.

• Benefits beyond DLA - once DLA is in place, check Carer’s Allowance and any Universal Credit additions you might qualify for.

Things that can wait

Not everything is urgent. These are important, but they can wait weeks or months:

• Understanding the full EHCP process (learn it when you need it, not before)
• Researching schools or specialist placements (only relevant if your current school can’t meet needs)
• Getting a formal diagnosis (your child can access support without one)

Common myths

You’re going to hear a lot from other parents, from well-meaning professionals, and from the internet. Some of it is wrong. Here are the three that cause the most damage early on.

“You need a diagnosis before the school will help.” No. Schools support based on need, not on a label. If the SENCO tells you otherwise, they’re describing their preference, not the law.

“DLA is only for children in wheelchairs.” It covers care, supervision, and mobility needs of all kinds. A child with autism, ADHD, anxiety, or complex health needs can qualify.

“The school has to spend £6,000 on your child before they can request an EHCP.” There’s no legal spending threshold for an EHC needs assessment. That figure is sometimes quoted in meetings as if it’s a rule. It isn’t.

Two things that are actually true:

• You know your child best. What you observe at home is valid evidence, and you’re entitled to put it in writing.
• You can request an EHCP assessment yourself. You don’t have to wait for the school to do it.

Getting help

Your local SENDIASS is the first place to go. They’ll help you understand what your child is entitled to and support you through the process.

Contact supports families of disabled children with practical information and a helpline (0808 808 3555).

IPSEA provides free legal advice on education rights for children with SEND.

You’re already doing the right thing

You looked it up. That’s not nothing. Most families take months to find out these services exist at all.

Start with the three things: school, DLA, SENDIASS. The rest of the system is real, but it’ll still be there once you’ve got your footing. And if you hit a wall or don’t know how to phrase something, the free AI assistant covers over 100 SEND topics and can help you work through whatever comes up next.

Sources and further reading

Legislation and official guidance

• Children and Families Act 2014, Part 3 (school duties for children with SEN)
• SEND Code of Practice (the guide to SEND duties for schools, LAs, and health services)
• Disability Living Allowance for children (official DLA guidance and application)