If you’re a working parent of a disabled child who receives DLA, you already know the truth:
your life doesn’t look like a politician’s version of “work pays.”

For thousands of families, working full-time and caring for a disabled child isn’t just exhausting — it’s often financially punishing. And many parents are discovering something shocking:

You can earn £50 extra… and end up £200–£300 worse off.

This isn’t because you’re doing anything wrong.
It’s because the UK benefits system is built in a way that unintentionally traps SEND families.

Let’s break down why.

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1. Universal Credit doesn’t work like people think it does

When your income goes up, even slightly — a pay rise, overtime, bonuses, or cost-of-living adjustments — Universal Credit recalculates your award.

Parents report situations like:

• Earn £50 extra
• Lose £250+ in UC
• Become ineligible for the Warm Home Discount
• Lose free school meals
• Lose help with rent or council tax
• Lose cost-of-living additions
• Lose childcare subsidies

So the government calls it a “pay rise”,
but for SEND families, it’s a pay penalty.

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2. The system does not recognise the real cost of raising a disabled child

DLA helps, but it doesn’t cover:

• Travel to medical appointments
• Therapy
• Sensory equipment
• Specialist childcare
• Lost work hours
• Higher household bills
• Food costs for sensory eating
• Replacing broken items
• Extra heating
• Wear and tear from behaviours
• Reduced working capacity due to caring

And yet, Universal Credit still treats families as if their costs are the same as everyone else’s.

They aren’t.

Research shows the average cost of raising a disabled child is between £600 and £1,200 extra per month.

Most families on UC or low-to-middle incomes cannot absorb that — even on full-time wages.

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3. “Work more hours” is not a realistic solution

Many parents are caring for children who:

• have EBSA and cannot attend school full time
• need supervision due to autism/ADHD
• have medical appointments weekly
• cannot cope with wraparound care
• have unpredictable meltdowns or sleep issues
• need specialist support that doesn’t exist

You cannot “increase your hours” when your child needs you home at 3pm
or is up until 2am with anxiety
or can’t be left with anyone except you.

Politicians never mention this part.

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4. The benefits cliff hits disabled families the hardest

When you cross certain thresholds, even by pennies, you can lose:

• Warm Home Discount
• Housing support
• The disability cost-of-living top-up
• Free school meals
• Certain childcare subsidies
• Reduced council tax
• Access to grants
• Blue Light entitlement in some areas
• Local support programmes tied to UC eligibility

So earning more doesn’t always move you forward.
Sometimes it pushes you off a cliff.

SEND families feel this more than anyone.

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5. Many parents feel punished for working

Here’s what parents tell us at AskEllie:

• “I got a £50 pay rise… and ended up £260 worse off.”
• “My income went up and suddenly I lost my Warm Home Discount.”
• “I’m full-time, exhausted, and poorer than when I worked part-time.”
• “I’m doing everything right but the system is designed to fail families like ours.”

This is not rare.
It’s the norm.

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6. What SEND parents need — and what the system is failing to provide

If the government wants to support working parents with disabled children, they must:

• Recognise the true cost of disability
• Stop removing support when income rises slightly
• Remove the benefits cliff for families on DLA/PIP
• Protect Warm Home Discount eligibility for disabled households
• Create a SEND cost supplement
• Penalise LAs who fail children (so parents don’t have to reduce hours to care)
• Provide proper respite and after-school support
• Reform Universal Credit so families aren’t punished for working

These are not luxuries.
They’re basic survival measures.

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**Conclusion: It’s not that SEND parents don’t want to work.

It’s that the system makes it impossible to get ahead.**

Parents of disabled children aren’t choosing to be poorer.
They’re choosing to keep their children safe, regulated, educated, and supported — because nobody else will.

The current system asks parents to work more,
while schools fail their children,
while services collapse,
while LAs break the law daily,
and while caring demands rise every year.

It’s unsustainable.

Until the benefits system is reformed to acknowledge the real cost of disability, families will continue to fall through the cracks — even those doing everything “right”.