My daughter Ornella is 18 and “educated one year below her chronological year group”. She has been in desperate need of support despite having been assessed for an education, health and care plan (EHCP) at the age of 9 and being granted one two years later.
When Ornella was 4, chickenpox left her with complex chronic health issues. Ever since, because she has had over twenty operations, long hospital stays, a life-threatening septic shock, multiple heart attacks and a prolonged coma, her health needs have had an increasingly detrimental impact on her learning.
I am her full-time carer. I have put my career on hold to look after her for the past 14 years, spent all my savings on private tutoring to make up for the lack of EHCP implementation, and had to become her teacher too for years at a time. I am exhausted. I suffer from PTSD from fighting constantly for the support she is entitled to.
Despite regular requests for annual reviews, we have been consistently ignored by school and local authority alike, year in and year out. This means that for six years Ornella was vaguely educated at home by tutors with variable academic abilities and no training or experience in learning needs.
We once received a letter of apology from a SEN team manager, promising new behaviours. For the first time, the LA provided intensive and costly tutoring to make up for missed learning opportunities leading up to her GCSEs. It lasted two months. Nothing else has been offered since.
Ornella is now at college, not only bearing the brunt of years of inadequate provision but also of unfathomable backlogs in specialist assessments. Cruelly, even when she finally managed to get assessed by CAHMS neuropsychiatrists as requested by the LA to document the aftermath of her coma seven years ago, the LA then employed more delaying tactics by refusing to incorporate her brain injury diagnosis into her EHCP, making for a mockery of it altogether.
Her educational needs have been heavily documented over 15 years, yet repeatedly ignored. The LA has consistently failed in its legal duties under the Children and Families Act, SEND Code of Practice and the Equality Act. We have just had an emergency annual review, but we are fast approaching A Level exams season and Ornella is still nowhere near accessing specialist support.
As a result, she has now disengaged from attending college and I find myself teaching her all over again. Her EHCP has actually compromised my ability to be her full-time carer because my precious time has been wasted on jumping through administrative hoops instead. I often wonder whether we wouldn’t have been better off not having one at all.
This is echoed by her college leaders who find themselves also wasting their time on the LA’s administrative blunders instead of spending it teaching. It is as if the EHCP had become an obstacle to her learning, and the whole sorry process is surely more expensive than delivering the support Ornella needed in the first place.
What it has done is made me a fighter. That and the PTSD might mean I and parents in my position present as challenging when we meet a new educational provider and have to start again from square one. Please bear that in mind.
But also, please join the fight. We are long past the point of needing urgent national and local policy changes. Parents like me need leaders like you to go beyond the battle for each individual learner like Ornella and demand systemic change.
We need simplified EHCPs, consistent over time and across the country, a digitised system that notifies all stakeholders when EHCPs are due for review, and proper accountability for spending and implementation. We need EHCP case officers who are qualified, trained, regulated and paid as professionals. And we need much more thought given to transitions.
I am now taking our case to tribunal, but I am not hopeful. In fact, the backlog plays in the LA’s favour because by the time a judgment is reached, many young people are likely to have left education anyway.
That might be the case for Ornella, but I am determined that it shouldn’t be the case for anyone else. If the LA think I’m going away, they are badly mistaken. Will you help?