Four in 10 SEND parents forced to quit work to fight for in-school support for their children

41 per cent of parents of children with Special Educational Needs and Disabilities (SEND) have had to leave their jobs to pursue their children’s legal rights to in-school support, according to a new survey by Support SEND Kids, a charity which helps SEND children access the right educational provision.

The survey, entitled ‘Fighting for your SEND child: the hidden costs’ polled SEND parents who had successfully secured an Education and Healthcare Plan (EHCP) for their child as well as those who were still trying to secure one. Across all groups, the findings highlighted how the EHCP application and implementation process negatively affected parents’ careers.

Key findings showed:

• Almost half (49 per cent) of respondents had to reduce their working hours or change their role when fighting to get the correct EHCP provision for their child – with 41 per cent of respondents having to give up work completely
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• 60 per cent of respondents identified that extra support from their school or local authority would help them to remain economically active
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• The proportion of parents who have left the workforce has risen to 47 per cent amongst women.

Without an EHCP, many SEND children are unable to access school education, and many SEND parents reported reducing their working hours or leaving their jobs altogether not only to manage the additional care giving involved in having a SEND child, but also to focus on obtaining NHS assessments and chasing local authorities to deliver on EHCP obligations.

In many cases, this involves a complex and costly tribunal process, where the legal costs are never repaid to families, even if their claims are successful, according to Support SEND Kids.

The survey also shows that an EHCP does not guarantee access to the right support: where EHCPs are inadequate, not properly delivered or not kept up to date, SEND children remain vulnerable. As a result, a wide range of SEND parents reported being engaged in ongoing battles with schools or local authorities either to secure an EHCP or to ensure that EHCPs were properly implemented.

 Some of the hidden costs cited by SEND parents in the survey include:

• Protracted processes: waiting times of two to four years for assessments mean that many families turn to the private sector, at a cost of many thousands of pounds. In addition, the costs required for legal representation or expert witnesses at a tribunal can reach up to £20,000

• Wraparound care: a lack of breakfast or after-school clubs that cater for SEND children limits employment options for SEND parents
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• Stress levels: it takes vast amounts of time and energy to gear up for a legal battle against a local authority. SEND parents reported suffering as much from the mental burden as the financial cost, with many telling of how this put a strain on their other relationships as well as their careers.

Rachel Amos, co-founder of Support SEND Kids, said: “Parents of SEND children feel like they are constantly fighting a losing battle just to get their kid to school. That 41 per cent of SEND parents have been forced out of work in the process is evidence of a fundamentally broken and unaffordable system.

“This means that families who are likely to have many additional financial costs due to looking after a child with additional needs are further financially penalised. In particular, women give up their careers. The overall loss for the family’s financial stability is obvious. The unjust EHCP system adds insult to injury by further limiting the earning capacity of these families, and this needs to change.

“SEND parents told us that they would welcome better collaboration as well as more consistent support from local authorities. We also heard requests for greater understanding from employers when parents need time off for assessments or key appointments and hospices to provide essential respite care that is not available from social care.

“For our part, we remain committed to supporting SEND families by continuing to offer free legal and professional guidance to help them navigate the many legal lands they will travel across as a SEND parent – often cross border from the tribunal to the family courts to the Court of Protection.”

 The Hidden Costs survey is the latest in a suite of free-to-access publications and guides by Support SEND Kids. The charity’s website signposts guidance and information from specialist lawyers, SENCos and other experts to support SEND parents who are struggling to navigate and interpret SEND law and other laws that affect SEND families.

Responding to today’s new survey struggle faced by parents to get the right support children with special educational needs, and delays in issuing EHCPs, Paul Whiteman, general secretary at school leaders’ union NAHT, said: “This is a serious issue across the country.

“It reflects the unsustainable pressure being put upon overworked school staff who review Education Health and Care Plans, the under-capacity specialist services which feed into them, and ultimately, the local authorities responsible for updating them. 

 “Local authorities have faced a big increase in numbers of plans, in part due to both the pandemic and the extension of plans until the age of 25 back in 2014. At the same time, councils are struggling to recruit and retain staff crucial to the process like educational psychologists and case workers, a situation compounded by the stress staff face. This means there is a heavy reliance on agency staff in some areas.

 “Some children with SEND have not had their plan substantially updated for consecutive years due to the erosion of local authority capacity. This is completely unacceptable.”