Counting the Hidden Costs of Raising a Child with Additional Needs
When parenting a child with special educational needs and disabilities (SEND), we all know the extra money for replacing things, extra time everything takes and the emotional toll this takes on the rest of the family, now referred to as the SEND parenting tax. It is not official but it is trapping thousands of UK households in financial and mental-health jeopardy.
The Bill
Scope’s 2024 Disability Price Tag puts hard numbers on the extra costs of disability. This shows an average disabled household now needs an additional £1,067 every month just to reach the same standard of living as a non-disabled family. That is 67% of post-housing income and this is assuming you are receiving all the disability benefits you’re entitled to. We know the ones that take 6 months to give you any form of feedback.
Cost-of-living crisis
Families raising disabled children, face a bigger squeeze than many. Family Fund’s Cost of Caring 2025 study, based on over 2,000 UK low-income households; found 44% cannot cover day-to-day essentials, 87 % have no savings, and 51% regularly skip meals so their children can eat. This is an additional pressure on top of the cost-of-living crisis, where we are constantly seeing raise in all bills such as energy bills. Researchers spoke to one mother who’s son’s life-support machinery pushes her electric bill to £600 a month, leaving the family £3,000 in arrears.
Careers on Hold
Money isn’t the way in which families pay for supporting SEND and others disabilities in their children. A Support SEND Kids survey revealed 41 % of SEND parents have quit work completely and another 33% have cut their hours to secure the support their children are legally entitled to. In the majority of households, women take on the caring responsibilities for the children and fighting to maintain the needs of their children. Due to this the “tax” lands disproportionately on mothers, widening the gender pay gap.
The hidden workload
Often in many households, paid working hours are lost yet parents aren’t just sitting with their feet up. They are fighting to gather evidence for education, health and care plans (EHCP), attending meetings with school or healthcare professionals, chasing local authorities and many other telephone calls, emails ect. Some parents describe this advocacy as a full time job, on top of working and caring for their child.
Mental-health
None of this happens in an emotional vacuum. Family Fund reports that 28 % of parent-carers show signs of clinical depression, while 68% of disabled children feel their wellbeing is harmed by household finances. The SEND parenting tax is also measured in anxiety, isolation, stress and lost childhood experiences.
Why call it a “tax”?
Like taxes are compulsory so are most of these costs. Can a ventilator be turned off to save on electricity? Can we skip the hospital appointments to save on petrol?, or how about refusing to buy items to keep your child safe? No, SEND parents have no options, these things are not luxury, they are absolutely essential. This is also shown to be taking a bigger share of every pound you earn, so for those on the lowest incomes, they have the biggest effect on their finances.
Can policy change help?
The new £500 million Better Futures Fund, announced on 13 July 2025, is a start. Promising to channel cash into social-investment to support 200,000 vulnerable children over the next 10 years. But does this go far enough? SEND families need systemic change and we need it now.
Benefits to real extra costs– The flat-rate Disability Cost-of-Living Payment barely scratches the surface of a four-figure monthly gap.
Guarantee suitable, affordable respite and childcare– How are parents to work effectively if we don’t feel the childcare or school are meeting their needs?
Streamline the EHCP process- This seems obvious.
Tackle energy poverty head-on. Social tariffs for households that rely on life-saving equipment would stop medical necessity from becoming a debt trap.
What can we do today?
Employers– Work with employees that have additional caring responsibilities, flexible working, paid cares’ leave ect.
Schools and local authorities– Treat parents as partners, not enemies. Parents want the best for thier children, take on board what is being said.
Friends and family– Offer practical help and advice (or don’t say anything). Help with school runs, a cooked meal, or simply listening to a ranting phone call on a bad day.
Parents– Keep a detailed log of extra costs and hours. This can strengthens benefit claims and can reveal patterns that help you argue for adjustments at work.
Counting the cost—and demanding change
Families are effectively subsidising a system that doesn’t yet work for their children. Recognising the tax is the first step; dismantling it must be the next. Until policy catches up, the meter keeps running, and parents keep paying. Every child deserves the chance to thrive without bankrupting their family.
0 Comments