Two in five parents of children with special educational needs and disabilities (SEND) are being forced to give up their jobs due to a lack of support, according to new research from the charity Support SEND Kids.
The research, ‘Fighting for your SEND child: the hidden cost’, included 519 parents with at least one child with SEND. In total, only 12% of the respondents said they found their working life unchanged, while 40% left work altogether and nearly half (48%) reduced their hours or changed to a more flexible role.
The most common reasons for changing their working patterns were a lack of local authority help (125 respondents), a lack of school support (81), and a lack of flexibility from their employer (36). Furthermore, over 200 of the respondents said they had to give up work completely while they were fighting to get the right Education Health and Care Plan (EHCP) provision.
Support SEND Kids says there is huge financial pressure on a vast number of SEND families, and long waiting times for NHS assessments mean many are turning to the private sector at significant cost.
Many of the parents interviewed also stated that their local authority (LA) does not cover the full cost of support for their children. One parent interviewed as part of the research explained how ‘hidden costs’ have a huge burden on their family life. They said: “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.”
Some parents spoke about how they had to pay huge fees for tribunals, with this cost rarely reimbursed to families even when local authorities lost their case. One parent said: “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!”
With all these extra costs at play, many of the interviewees said they were unable to give up work, while the remainder said they had no choice, particularly if their child was unable to attend school.
A lack of after school provision for neurodivergent children was commonly highlighted, with many saying that while there are after school clubs for neurotypical children, there is nothing on offer for children with special needs. This, alongside a lack of provision in the summer holidays, makes it particularly difficult for parents to work and provide care for their child.
Many of those interviewed said having to give up their jobs, coupled with a lack of provision and support, has significantly impacted their mental health, as one parent put it: “The biggest hidden cost is parental mental health. My mental health really suffered due to the strain of trying to support my child and go through the hoops to get her the right support. I ended up in an acute mental health unit for two months because I had a breakdown. I still struggle with my mental health now and it has taken its toll on my family.”
The report concludes that the simple answer to all these problems is more money and support, as Tamsin Ogilvie, User Experience Lead at Support SEND Kids explains: “Being a SEND parent is really expensive. Extra care and extra resources are paid for out of parents’ pockets, as is the legal cost of fighting for a child’s educational rights. The EHCP process is adversarial, with Local Authorities fighting EHCP provision that is then routinely allowed at appeal. Going to tribunal is very expensive for parents who rarely recover the costs of time delay and legal fees.
“It is mistakenly believed by many that a child needs a diagnosis before being able to apply for an EHCP. While this is not true, it drives many anxious parents into the private sector because of significant delays with CAMHS and NHS mental health assessments. Even with an EHCP, there can be annual battles to ensure provision is met which cost time and money,” she said.
Thankfully, support is on hand and Tamsin says anyone who is struggling to understand the laws on SEN and disability can contact Support SEND Kids for free advice.
