The high costs for parents of children with SEND

By Ilias Kostalas, Assistant Director for Children, Families and Community at LDN London

I lead services for children with special educational needs and disabilities (SEND) and their families, so I have a clear view of the challenges children with SEND and their families face. I’m writing this as the government has finalised benefit cuts, and I’m deeply worried for the families and children we support at Learning Disability Network London.

Child poverty poses significant challenges for families raising children with SEND. It deepens financial, educational, and social inequalities. These families are more affected due to their additional care responsibilities, limited chance or time to work, and the higher day-to-day living costs they face.

With the government making significant changes to the benefits system, there is a real risk to the well-being of children and young people with SEND. It will be harder for families to fully meet their children’s needs.

I meet many different families and, regardless of their background, they all face significantly higher costs simply because their child has SEND.

Hidden costs of raising a child with SEND

Life is undeniably more expensive for families of children with SEND. On average, they face an extra £581 in monthly costs, and for one in five families, it exceeds £1,000. These costs include significantly more expensive childcare—such as nursery fees or after-school clubs—specialist therapies, home adaptations, medication, and transport to school. The bills pile up.

Beyond the financial burden, many parents of children with SEND must reduce their working hours or leave their jobs completely to care for their child and navigate the complex education, health, and care systems. Some young people with complex needs require 24/7 care, leaving parents with little choice but to sacrifice their careers.

Looking after a child with additional needs requires time, money, and emotional resilience. This takes a toll on parents’ mental health, yet the government is now making it significantly harder for those with mental health conditions to qualify for financial support.

According to Carers UK, one million carers have reduced their working hours or left employment, leaving them on average £10,000 worse off per year. Despite these challenges, parents must still fight for the little support they do receive: whether battling for an Education, Health, and Care Plan (EHCP) or simply trying to retain the small amount they receive from Carer’s Allowance each month.

Carer’s Allowance is now £83.30 per month. That is not much more than £2 per hour—a stark contrast to the national minimum wage. Parents who work while receiving Carer’s Allowance also face a strict earnings cap of £196 per week, limiting their ability to increase their income.

Families are struggling – and we’re firefighting

In our Family Services, we spend an increasing amount of time helping families maximize their income. In 2023/2024, we supported parents with income-based benefits on 364 occasions, a 73% increase from the previous year.  We’ve also had to make more food bank referrals, rising from 294 in 2022 to 331 in 2023.

The situation is set to worsen with the government’s recent announcement of tighter Personal Independence Payment (PIP) eligibility rules. By 2029/30, an estimated 800,000 people who would have previously qualified for the daily living component of PIP will no longer receive it. As a direct result, 150,000 people could lose their entitlement to Carer’s Allowance or Universal Credit.

The long-term cost of short-term savings

Poverty affects many children and young people, but for those with SEND, the effect can be more severe due to higher living costs and the complexities of the education system. It is essential that children and young people with SEND are given the same opportunities as everyone else.

Stressed and mentally exhausted parents— who are worried about making ends meet—struggle to be effective carers. Family relationships suffer. And children get caught in the middle. While the government may see these cuts as a way to save money in the short term, the long-term emotional and financial costs will be devastating and not justify any savings.

Children who don’t receive the right support will grow into adults who need even more assistance from the government.

We work with so many brilliant parents and carers who are doing an amazing, yet incredibly difficult, job. We are proud to support them, but they are constantly swimming against the current. The government should be supporting the most vulnerable, not making their lives even harder.

So why are we adding more financial pressure to families of children with SEND?