SEND – Read our Stories, Hear Our Voices

Behind all the statistics are stories of families navigating their way through a system that isn't always kind, and certainly isn't easy

Over the past few months, the failings of councils up and down the country to support those children with Special Education Needs and Disabilities (SEND) have been highlighted by Ofsted, in the media and in Parliament.

Behind the statistics are the stories of many families who have had to fight to get their children the support they need to gain an education in whichever way is appropriate, and that looks at and supports their individual needs. These are stories that need to be heard and listened to so our children and young people have a better chance at reaching their potential.

As the mother of two young people who have cerebral palsy and their own educational needs, I can understand the frustration and all-encompassing hard work that goes into communicating with the systems and offices that govern which education establishment a child should attend, and the support that a child should have within that establishment. As the parent of a child with disabilities you are on call 24 hours a day for many different reasons, one of them being if they are struggling at school.

I recently visited a support group that Laura, a mother who has first hand experience of the battles parents face to get their children the support that they need, has set up because she knows that there are many other parents who can relate, want to connect with and learn from each other. Within the group parents can give each other tips - such as always take someone with you to meetings, who perhaps isn’t as emotionally involved, and can take notes for you. Many of the parents felt that as they had gone through the system, and had discovered that you needed to be persistent to get the support your child requires, they had taught themselves the skills of expressing an argument and putting forward their case to be heard and taken seriously.

Many parents feel they have to give up careers so they can fully support their children and throw themselves into fighting for what they know is best for their children. This is something Steph did, giving up a career as a District Nurse. Obviously, this means that the failings of the Education Authority have had the effect of the NHS losing a professional from their service.

The mothers told me that they often felt that to get the Education Authority to take their child’s needs seriously, they would have to place their child in an environment that was traumatic for them. This goes against every parent’s instinct, and is contrary to all the research done into child health and welfare and ensuring that children grow into healthy, well-prepared adults.

Abigail, whose son has Down’s Syndrome, has fought to keep him within a mainstream school setting, as the world and society still has a lot of work to do before anyone with any disability can feel entirely comfortable. I felt the same for my son, but a special school was a better option for my daughter.

Not every child can cope within the school environment, and then the parents will often find themselves having to research the best provision and support for their child before starting a long fight to secure that provision and support. School refusal, tribunals, home schooling and a lasting impact on family members and life can all follow, with a feeling that both educational establishments and the Local Authority are at fault.

The families of children of all ages, from four years upwards; and any disability, can find themselves in the middle of this maelstrom.

All the mothers I spoke to thought there were three key areas that needed to be addressed with a view to start making improvements in the system in which they find themselves.

The number one concern was a lack of funding, and whilst there were concerns that Local Authorities were trying to get out of providing the funds to ensure that these children and young people’s needs were being met, there was also disquiet that schools were ‘playing the system’ and keeping funding that had been provided whilst insisting that they could not ‘meet need’ and not providing the support as detailed in the Education, Health and Care Plan (EHCP). A problem that Megan understands all too well, having experienced that with her daughter’s schools. With regards to EHCPs there was a consensus that they aren’t really working the way they are meant to*, particularly as the layout and what’s included in an EHCP can vary from county to county. This is further compounded by the fact there is a high turnover of staff within the departments that action the provisions detailed within an EHCP.

The mothers also recognised that the funding of SEND support over all aspects – education, health and social care - from central Government just isn’t there. As a mother whose young people are older, and can remember when the SEND Code of Practice 2001 came out, I would say that while initially support improved, over recent years this has been eroded away. 

The second area that causes difficulties for all the families is the lack of knowledge within the teaching industry, but particularly problematic is the lack of understanding and knowledge of Special Educational Needs Co-Ordinators (SENCOs)**. All the mothers felt that the training of teachers needed an overhaul, as well as the specialist training for SENCOs. It will be interesting to see if the new mandatory professional qualification that anyone taking on the role of SENCO needs to undertake and complete will make any difference.

Finally, all the mothers including Laura and Angelika, who have struggled to find appropriate placements for their children, feel that the lack of specialist provision, and no spaces within the establishments that do exist, mean that the only way to get such an establishment to be named as a placement for their child is to go through a tribunal. With a tribunal taking up to a year to be heard, this means a child can be out of education for a large portion of their formative years.

As the recent publicity has shown there are many, many families who just want the best for their children and young people so that they can have the chance to live fulfilled lives, and reach their potential. Every parent wants that for their child, don’t they? We must hope and campaign for the Government, individual MPs and Local Authorities to now take up the mantle and work with parents to secure a bright future for all our children.

* Educational, Health and Care Plans (EHCPs) bring all the educational, health and social care needs together in one document and detail the support that the child or young person requires alongside the preferred educational establishment of the parent/family

** Special Educational Needs Co-Ordinators - teachers who take on the specialist role of being responsible for all those pupils in an educational establishment who have an extra learning need. An EHCP is not required for a child to come under a SENCO’s remit.