Broken SEND system forcing families to pay for support

Parents of disabled children with complex needs are spending an average of more than £8,500 a year because the SEND system is failing, new research from national disability charity Sense reveals. 

Polling of 1,000 parents and family carers of disabled children with complex needs, carried out by Censuswide on behalf of Sense, found families spent an average of £4,270 in just six months on support that should have been funded by their local authority – or would not have been needed if the system was working properly.

Children and young people who need additional support in nursery, school or college currently access this through the SEND system by applying for an individualised Education, Health and Care plan (EHCP), which is meant to legally guarantee the support each child needs. However, long delays, inconsistent decisions and EHCPs that don’t fully meet disabled children’s needs means many youngsters miss out.

This failure means parents often feel forced to pay for private assessments from professionals such as speech and language therapists, occupational therapists and education psychologists to evidence their child is in need of SEND support, and to fund therapies including physiotherapy, speech and language support and occupational therapy to fill the gaps. The alternative is often risking their child’s development and health by leaving them on waiting lists that can last years.

Sense’s research found that 42% of parents had paid for private assessments to secure SEND support for their child, spending an average of £1,791 in the past six months.

44% had paid privately for therapies – such as speech and language therapy, physiotherapy or occupational therapy – that should have been funded by their local authority, spending an average of £1,680 in six months.

39% had made their own transport arrangements because their local authority would not fund home-to-school travel, spending an average of £1,567 over six months.

Beyond these direct costs, many families are also losing income. Two in five parents (40%) have had to reduce their working hours because appropriate support is not in place, while more than a third (35%) have left their job altogether.

Sense, a member of the Disabled Children’s Partnership (DCP), is now calling on government decision-makers to ensure the needs of disabled children with complex needs are fully addressed in any SEND system reforms. Unfortunately Sense’s research shows 27% of parents of children with complex needs simply don't have confidence that the reforms will improve the system.

The charity warns there must be adequate funding for the SEND system, robust legal rights for disabled children and properly joined up support between education, health and social care professionals supporting disabled children so EHCPs work properly – or disabled children’s development and emotional wellbeing and their families’ financial security will all be at risk.