Watch the heartbreaking video diary of Ria and her daughter Izzi from Hertfordshire
A mother from Hertfordshire who can't find a special educational needs school for her autistic daughter has been keeping a video diary to highlight the issues of caring for her at home.
Izzi from Hertfordshire lives with her mum Ria. Until recently she was at a residential school near Royston.
She was a resident at Meldreth Manor until September, when she was given notice to leave, because the school said they could no longer cope with her needs.
Meldreth Manor supports "children and young people aged 6-19 with highly complex learning difficulties associated with conditions such as cerebral palsy, acquired brain injury, degenerative conditions or autism spectrum conditions requiring a specialist approach."
Her mum Ria said: "Izzi is entitled to 52 weeks specialised residential placement but there just isn't one or even respite available to us. It's just not safe to take her out. I've been out once for fifteen minute walk."
In a statement Meldreth Manor, said: "Schools like ours sometimes aren’t able to meet the changing needs of a particular student. Meldreth Manor’s specialist staff always do their best for all the young people in our care, who typically need one-to-one support. When a young person’s needs change, we talk to the family and the student’s local authority to explore solutions. We can respond temporarily by increasing the number of staff for a particular student."
"Often it makes all the difference. Sometimes there isn’t an alternative to accepting that our school is no longer the best place for a student who continues to need the highest level of staffing. It is always a difficult decision to reach balancing the best interests of all the students in our care with the higher needs of a particular child. In these circumstances we work compassionately with the family and the student’s local authority as they look for a suitable alternative for the young person.”
It means Ria and Izzi are now at home, all day, every day. Ria says that because of Izzi's needs it means that she needs attention for "every waking minute".
Izzi has complex needs including Autism. Any disruption to her routine can result in outbursts known as 'meltdowns'. These meltdowns can cause Izzi to become violent, loud and uncontrollable but crucially, they're not something she can control, and are a direct result of changes to routine.
What is an autistic "meltdown?"
According to the National Autistic Society, a meltdown "is an intense response to an overwhelming situation. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses control of their behaviour."
The loss of control can be expressed verbally (eg shouting, screaming, crying), physically (eg kicking, lashing out, biting) or in both ways, according to the National Autistic Society.
It's not a temper tantrum
It's not a temper tantrum
The National Autistic Society says, "a meltdown is not the same as a temper tantrum. It is not bad or naughty behaviour. When a person is completely overwhelmed, and their condition means it is difficult to express that in another way, it is understandable that the result is a meltdown."
An expression of feeling
An expression of feeling
A meltdown is "not the only way an autistic person may express feeling overwhelmed. They may also refuse to interact, withdrawing from situations they find challenging or avoiding them altogether," according to the NAS.
Ria says Izzi's meltdowns happen "somewhere between 12 and 20 times a day."
"If I move towards her it gets worse and worse. If I try and get strict it gets harder, normally if I move away it's the quickest way of reaching calm, and getting her back to a normal state."
Ria is trying to modify the house to make it safe for Izzi, but says she dreads the moments workmen have to come in because it upsets the routine once more. To help with the modification Ria has successfully applied for a disabled facilities grant, which means she can convert part of her house into a space for Izzi.
She says she wants the best for Izzi, but after weekly meetings with Hertfordshire County Council - they currently don't have an option for school.
Hertfordshire County Council says: "While we don’t comment on individual cases, we are fully committed to making sure that all children with SEND in Hertfordshire receive the education they need and deserve, and work in partnership with young people, parents and schools to that end."
They added, "we are working with the family to provide education support at home while we look at longer term options."
Ria said: "I'd like her to attend school where she can have friends, be with peers - she had friends at the school she was at, where she could try different activities, where there are autism trained teachers and the right facilities and where she can do visits in the community as we're completely housebound."
She fears that's not going to happen soon though: "we're a long way from that, there's no option, not even a conversation going on with a school at the moment, none appear to be available, and there is no education at all. There is currently not even an opportunity for one day's respite."
Click above to hear an interview with Tim Nicholls, the head of Policy at the National Autistic Society.
Ria and Izzi's desperate story is not an uncommon one. Over the past 18 months, ITV News Anglia has told many stories of those struggling with navigating the system designed to help people with Special Educational Needs and Disabilities.
We've heard from parents whose children have been out of school for months, councils struggling to balance the books, and children who just want to leave the house for a sense of normality.
In September parents in Central Bedfordshire protested over a lack of provision for children with SEND in the area.
Later that month Suffolk County Council admitted in a report that the parents of children with additional needs had been "let down".
In October parents in Southend called for a new transport service to be appointed for their children because of "distressing" problems in the first few weeks of term.
Thousands of people are touched by issues connected with SEND, and we want to tell YOUR stories. If- like Ria you are experiencing an issue with the education system, or you want to highlight the work being done to help people please get in touch via firstname.lastname@example.org