Our research uncovers the impact on SEND parents of the endless juggle between work & family life.

We have been overwhelmed by the response to our research survey. Thank you to everyone who took part and shared so many personal stories. The results speak for themselves.

Our research highlights that a shocking 3 in 4 parents of SEND children have their working life affected, having to cut hours or give up work entirely. With the impact of SEND children’s needs overwhelmingly falling on women.

The hidden cost is due to: weakness in the EHCP system, lack of specialist after-school & holiday care, increased demand on parents time at appointments and having to take children out of school when the school can’t cope. 

In the Press

Our voices are being heard  

Sky news partnered with us, and amplified our research, including an interview with Support SEND Kids trustee, Caroline Withers, broadcast throughout Saturday 7 Sept 2024.

• Sky News article  
• Sky News report
• BBC News article
• iNews article
• Extensive coverage on: Radio 5 live, LBC, Talk Radio, Greatest Hits across the regions

One Mother explained all the ‘Hidden Costs’ to us: “Time, energy, access to information to equip ourselves to take on the LA. The emotional and mental cost of having to fight on behalf of our children for everything. Impact on all our other relationships, missed career progression opportunities, increased costs when we have to bridge the gap left in LA provision for our children out of school or in school part time. Paying for private reports, private professional support, funding provision that should be delivered through the EHCP but isn’t.”

Results of our research

The impact of SEND children’s needs overwhelming affects women

Our research was conducted by survey, completed by over 500 SEND parents and, over 87% of the respondents were women. 

Some women say they “can’t afford to give up work” because of the costs associated with the extra needs their SEND child has, while many others have had no choice but stop work and careers as their children are unable to attend school (37% of respondents who selected ‘unable to work’ did so because they are home schooling their children).

Many more have had to compromise work in order to provide wrap around care. Many respondents point out that neurotypical children have many choices for after-school clubs, but nothing is offered to children with special needs. Having no after-school support significantly reduces the working day for many women, as does a lack of provision during the school holidays.

Impact on parental mental health is significant, when women give up jobs they may lose a vocation or career that they have invested in heavily, all women who give up work lose financial independence. Having to take themselves out of the workplace is damaging to their mental health. “How many caring and diligent teachers and nurses can the country afford to lose by not providing adequate childcare?”

There is huge financial pressure on a vast number of SEND families. Waiting times for CAMHs/NHS assessments have meant many families turn to the private sector. Assessments can cost thousands of pounds. In addition, some local authorities are not covering the full cost of support for children. Parents describe how they have to step in to pay for: weekly physio, extra speech and language support, online schooling, among other costs. One stating: “[we are]having to spend three times as much for a disabled child to learn a new skill”. “If they [local authority] adhered to the law, I would still have a well-paid career”. 

Chasing the local authority to deliver on their statuary obligations or hold them to account when deadlines are endlessly missed, often means going to Tribunal. “With barrister and expert witness support both tribunals cost in the region of £20,000. …The LA capitulated on the morning of the tribunal because they had no case”. 

This substantial cost is never repaid to families even when LAs lose their case which (based on research from IPSEA) is 90% of cases. “LAs save money by refusing support, they lose cases that go to tribunal over 90% of the time and never have to pay parents’ costs. It’s a false economy, as we would rather spend our time and money on helping our children. If they receive the help they’re entitled to, the majority [of SEND children] will be independent contributing members of society. Sadly the lack of early help fails our children, and the employment rates of SEND people are abysmal. It need not be this way!”

We identified 2 main causes that impact the ability to work:

1 – Not enough suitable care provision for the child while the parents are at work. 

If provision from school, Local Authority or other care team falls short, it affects the length of the working day during term time and all days during school holidays. Unlike clubs provided for neuro-typical children, there is a lack of specialist wrap-around care for neurodiverse, SEN or disabled children. In addition, children who struggle to attend school, or those who the school fails to support adequately, spend unpredictable days at home. And if a child is unable to attend school at all, they need full time parental care making work virtually impossible.

“I have had to give up a high paid career to look after my son. He’s 11 so can’t be at home alone. He’s not been to school full time since year 1. There is no prospect of him attending school again. He is not able to cope with an independent PA as he does not trust adults in education due to school trauma. This is unlikely to change as neither the NHS nor the LA will provide treatment and as I can no longer work we cannot afford to go private. My time is spent trying to re-engage my son in education … I am having to bear the costs of educating my son as he is no longer on a school roll and my son can’t access the section 19 offer. There is also the mental toll which has affected all our family.”

As part of the work/carer decision are the costs associated with additional care during holidays or after school. “Funds for outings during the school holidays and weekends. It’s £100 per day for my brother to attend a workshop with other special needs kids. It’s just not feasible to make that financial commitment weekly … There were no suitable school places for my child, He was rejected from 15 schools, I have to be present for any tutor sessions it would have been helpful to be able to have had a care assistant during these sessions so that I could continue to work.”

“Our child currently lives in a hospital, 1.5 hours each way (on a good day) … If we don’t visit, they may not eat much, sadly.”

2 – Demands by school, LA, health professionals for parent to be available at short notice. 

The other impact is made by demands from the school or local authority on the parent. The parent is assumed to be ready at a moment’s notice to attend meetings, come into school to handle difficulties with their child or to attend Tribunal or other legal requirements. 

“[We need] Schools – to take the initiative to identify and put in place the correct interventions needed. Local Councils – to not have unlawfully denied an EHC Needs Assessment, to not have unlawfully denied to issue an EHCP resulting in a 12 month battle to tribunal, to help parents to find a suitable school that can provide all the support required for our SEN child instead of refusing to assist because they have to be ‘impartial’. Employers – I had to quit a conventional job and go freelance due to all the time off needed for meetings, organising professionals to assess my child, review reports, research, and putting together cases to fight the LA’s many unlawful decisions. I also needed time off to find a suitable school for my child and then assist in the transition.”

“Needs of child were such that I needed to be on call whilst child was at school. She rarely made it through a whole day and I would be called to collect. Sometimes sent home due to lack of staff. Home schooling became the best choice. She wouldn’t accept anyone other than me. No energy or time for paid work or social life.”

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