I mean, how do you explain lockdown to a child with autism . And although many are now back in the classroom, for theirfamilies, the anxiety goes on. Sofia screams tonight on panorama after months of crises in education, is another one now looming . The system is awful. It is killing parents. This time, for parents who say they have to fight for the support their children need. My childs future hangs in the balance. This is sofia. Today is a good day for her, but life isnt always like this. Hey can youjump high . Sofia is one of more than a million young people in england with special Educational Needs and disabilities, or send. Thats great hello do you want to see the doggy . Yeah laughter so, sofias conditions. Mm hm . How do they impact her on a day to day basis . They impact her whole life, really, and the way she interacts with the world, so she needs a high level of support to keep her safe. She doesnt have a communication system, shes non verbal, and she has profound sensory needs as well. But with the right support, theres absolutely no limit on what she can achieve. Of course, every child is different, and the same goes for send children. Many are supported in mainstream schools using existing resources, but sofia is one of a fifth of those whose needs are so complex that she requires more intense, more costly support set out in whats called an education, health and care plan. Shes assessed most recently, by educational psychologists, that her cognitive age is similar to a child between the ages of eight months and 20 months, but she is, in fact, eight years old. It must be hard as parents. Yeah, just the everyday normal activities that you would think come easy to the average family, dont really to us. We have to strategically plan everything we do throughout the day to make sure everything we do is suitable, is a suitable environment for sofia, really. Since lockdown, things have been really tough for the family. While schools closed to the majority of children, the government said that the most vulnerable, including those with complex special Educational Needs, could still attend, subject to a covid 19 Risk Assessment showing it was safe for them to be there. What was your understanding of your entitlements as parents . We kind of assumed everything would run as it did pre lockdown. We thought she would continue in a routine of going to school. It then, very quickly, became clear that it wasnt going to be as easy as that. The family were sent a flow chart similar to others used by schools and councils elsewhere in england. So at the very top it says, am i a critical worker in the covid 19 response . And you were no, right . We are no, correct, yeah. So theres a yes 0 no, so we are no. So it leads to keep your child at home and dont send them into school. That was all we had to go off, really. Stuck at home during lockdown, sofias Mental Health started suffering. I couldnt have predicted what happened to her in such a short space of time. She deteriorated. We sort of got the impression that we werent being believed. So becky and tom decided to film her. Some of what they recorded is upsetting. Sofia screams and even after the lockdown restrictions were eased, sofia still struggled. Its horrible to even watch now, never mind at the time. And she would do this multiple times a day. Sofia continues screaming. Sof, mummys here. She became quite violent very quickly, which was never her. 0k, darling, i know. She would harm herself as well as others. She would pull chunks of her hairout. She would. Bang her head against the wall, bang her elbows against the wall. She was covered head to toe in bruises that were self inflicted. So it really did get to a point where you had no option but to physically restrain her. To be a grown man physically restraining a seven year old girl, its, um. Its not nice. If your childs not well, and your child is in pain. And theres nothing that you can do, its very difficult for anything else to fall into place, so its impacted our entire family. Sorry. Liverpool City Council Told panorama that its aware of the additional pressures and challenges that covid i9 has placed on children and families, and that its communication with parents hasnt always been good enough. Across england, other parents have been feeling the pressure too. Brex . Some sent videos. Hi, are you 0k . Im exhausted. We normally have pretty much full time support so that we can actually do things like go to the loo or make a cup of tea or breathe. So my current life looks like this. No i mean, how do you explain lockdown to a child with autism . He smashed a wooden chair against a door into pieces. Mummy . In april, on average, just 4 of send children with education, health and care plans were going to school, eitherfor all or part of the day. And although that number rose to 27 byjuly. Child yells. Families struggling at home without support. No . Felt abandoned. I dont particularly feel like ive had any kind of support from anybody during lockdown. Its always been me doing the chasing and my daughters Mental Health. Its. Its really bad. Its really, really bad. But parents have been complaining about the system since long before lockdown. The impression that i get is that my child, and children like her, are an unreasonable drain on resources. In 2014, David Camerons government overhauled send provision, saying it wanted to improve services for young people from birth to the age of 25. Families were promised that where a young person might have a need for more support than is currently available in school, their child would be assessed and the parents involved. Local authorities are responsible for managing the process. This is the education, health and care plan that the local authority formulated for my daughter, sofia. Its difficult to plainly say why it is incorrect. Theres not much of it that is correct, to be honest, which surprises me because its a legal document. Its absolutely worthless. It has no value at all to my daughters education. The local authority, i feel their priority is keeping costs down, whether that means meeting my daughters needs or not. Plans are supposed to be tailored to the needs of each individual child. There are parts of it that dont relate to my daughter at all. Sofia is an eight year old girl. And just on this page alone, theres three instances where theyve referred to her as his. So weve got here his progress, his education, his needs, so i believe that that is copied and pasted from a document that was originally written with another child in mind that was a boy. Its expensive to provide the kind of intensive support that many children with complex needs have. It can cost £15,000 a year to support a child with a moderate learning difficulty, and as much as £45,000 a yearfor a child who has profound and multiple difficulties. Me go, go no. Woof woof yeah. That is a good doggy. Yeah. Four year old benjamin starts school this week in london. Are you excited to go to school . Yay benjamin has downs syndrome. He has Narrow Airways so choking is a risk. And he has Sensory Issues that mean pretty much anything he sees, he wants to pick up to touch and taste. If left unsupervised, he would just wander off or lick things, put things in his mouth. Literally anything . Anything, yeah. Yeah, so we do have to watch him constantly. After what mum nursev felt was a long and overly complicated process, she finally got an agreement for benjamins needs to be formally assessed. And what was that process like . Well, painful and not straightforward. I still dont understand the process, even though ive been through it. Benjamin was assessed by a teacher and physiotherapist. 0k, chew, chew, chew. Chew. Both detailed the fairly extensive support they felt he needed. Good boy. And an educational psychologist recommended he have a one to one teaching assistant. How would you describe the plan . Poor. Utterly poor and not fit for purpose. There was something incorrect on every page basic information such as his ethnicity. He was put down as White British. He is obviously not White British and theyd met him so knew that, and there was hardly any provision on it, so instead of one to one support for 32. 5 hours, which is how long benjamin will be at school per week, there was provision for 22. 5 hours, so there was ten hours missing. And theyre having a party yeah. Benjamin, dont lick it. Benji, put it down. Good boy. Put it down. 0k. If hes allowed in School Without that one to one support, what could happen . Worst case scenario, god forbid, is he could die. He could choke on something and die. Yum, yum, yum, yum, yum the royal borough of greenwich says it recognises the importance of collaborating in drawing up education, health and care plans for young people, and every family is given the opportunity to comment on the plan before it becomes a legally binding document. In liverpool, becky and tom have decided their only option is to appeal the plan drawn up for sofia. I really dont feel like i have a choice. All of us, notjust my daughter, we get one shot at childhood, one shot at education. In the six years since the system was changed, the number of appeals against the content of education, health and care plans increased from 453 to almost 4,000 in 2019. For parents, appealing can be emotionally draining and expensive. With local authorities spending an estimated £40 million last year on lawyers, expert reports and testimony to defend cases brought against them at tribunals, many families feel they need to buy in help too. Ali fiddy runs a charity that helps parents through the process. Candles when they are faced with a local authority who is coming armed with various professionals and lawyers, they often feel theyve got no choice but to arm themselves with something similar. They will often pay for those on a private basis and we have heard of astronomical fees being charged by a range of both solicitors and non solicitor advocates. Sofias appeal goes to tribunal later this month. We did look into legal representation. We were quoted a capped fee of £9,000, and that was before commissioning any specialist reports which we would need for evidence. I feel that that just proves how unfair the system is. Its not in the favour of parents and families, and its certainly not in the favour of these vulnerable young children. In the summer term, sofia did go back to School Although her parents believe she still didnt have all the support she needed. Sofia laughs Liverpool City Council has told panorama that aspects of its send processes and provision have fallen short of what it wants to provide for all who experience it, and says it apologises to those parents. Across england, in the school year ending in the summer of 2019, councils lost 92 of all appeals heard by tribunals. Each year, around a third of the appeals lodged are brought by parents trying to get their childrens needs assessed. He cries the system is awful. It is killing parents. It is damaging parents, their Mental Health, their mental wellbeing. Itsjust wrong. Completely wrong. Although the law says children who might have a need should be assessed, there is growing evidence of councils finding reasons not to. Panorama has heard from parents who feel driven to despair. Boy shouts it is really hard, and its very frustrating. Its cost me every penny i have. I have nothing left. Which upsets me a bit, because ive worked damn hard. Sorry. Its just really frustrating. Ive worked so hard, and i have nothing to show for it, because ive had to fight to get my son in education. When did they start deciding that. Children are less than, and that they dont matter . There we go. Put your hand out flat. Put it out flat. There we go. They laugh Hayley Harding runs a Campaign Group for parents of children with special Educational Needs and disabilities in sutton, south london. She set the group up after her son matthew, who was four at the time and had just been diagnosed with autism, was told he didnt need an assessment. It was an e mail, which was saved under the wrong childs name. It had please delete in brackets left in it, and they said, we are rejecting you for an assessment. Its probably one of the most stressful things ive ever been through. The e mail came from cognus, an independent company that had been set up by Sutton Borough Council to manage its send provision. Hayley put a call out on social media to see if other parents in the area had had similar experiences. Within two days, i had over a hundred parents join, all coming to me saying, thank goodness somebody is actually doing this. I thought it was just me. I dont feel alone any more. And now the group stands at 330. Hayley, a lawyer, started to investigate, finding that at the start of 2019, Sutton Borough Council had turned down 68 of the 108 requests for assessments. Thats almost three times more than the National Average at the time. She also discovered a document that suggested there was a drive to reduce demand for assessments. So, this was the send strategy which was signed off in 2018, and, as you can see, one of the key targets for autumn term was reducing demand for assessment. Its there in writing, and we know of a 35 page booklet which they produced, saying unless you meet these 35 pages of criteria, youre not going to get an assessment. Sutton Borough Council has since withdrawn the policy and the booklet. In march 2018, its send services failed an inspection by 0fsted and the care quality commission. Earlier this year, after another inspection, it was judged to have made sufficient progress in addressing the weaknesses identified. Sutton Borough Council has told panorama the majority of families of children with plans in the area are positive about the service they receive, and it has set up meetings with anyone who isnt. The number of refusals has been rising steadily every year since the system was rolled out. Across england, more than 18,500 children were refused assessments last year, and almost 80,000 have been refused since the system was introduced six years ago. The local government ombudsman investigates allegations of maladministration against councils. In the last school year, an unprecedented 91 of complaints made about Council Decisions on Education Health and care plans were upheld. The house of Commons Education Select Committee has investigated special Educational Needs provision. The legislation makes it very clear that the child must be the priority. Is the child the priority at the moment . I think that, at the moment, the system mitigates against the child being the priority, because what we have created is an adversarial system, a treacle of bureaucracy for parents to navigate through. What seems to happen is its not the child that is at the centre, its the process, which is the bureaucracy, which seems to be at the centre, so that unless you are sharp elbowed or well heeled and navigate the system, you wont get that proper care, necessarily, for your child. The local Government Association represents councils in england. I dont recognise that, because i think that what we want to try and do is make it as simple and as efficient as possible for parents. However, there are criteria that have to be assessed, and that may be where theres some parents whore finding theyre having stumbling blocks. When tom browne moved to kent with his wife and three children, he thought he had the wherewithal to navigate the system. I mean, being a lawyer, you know, im very good at keeping evidence, im good at pushing and pressing, because im trying to get some help for my kids. Before the move, his two sons, both of them autistic and with anxiety, had needs assessments, and both had been given plans outlining the support they should have. The Educational Health care plan, it was literally issued just before we moved, and we were advised that they would be transported across to kent. So, we thought great. When they got to kent, the family felt the care outlined in the plans wasnt provided, so tom put in a formal complaint. At a mediation meeting with the council, he says he was made an offer. We were offered a cash payment of £100,000. There were no limitations on how we spent it. The only condition was that we provided a proof of residence that we had moved out of kent, and also that we agreed not to return to kent for five years as residents. They are offering you £100,000 to leave the county and become somebody elses problem. Basically, yes and i was told that we couldnt return to kent for five years. How would that help your children . Because maybe another local authority would be able to help us. How does that feel to you . Im still staggered by it, i must admit, to this day, why they would use that money to get us out of the county rather than use the money to help my kids. It feels like a huge waste of public money. A Draft Agreement was drawn up, which tom eventually decided Kent County Council has told panorama the offer was made because it understood the family wanted to move. Although tom says they didnt. The council says it has struggled to find Common Ground with tom, and it believes it can meet the needs of both boys in kent schools. It says the mediation failed, no amount was agreed, and no monies were exchanged. And, it says, it puts particular emphasis on increasing the quality of parental engagement. The local Government Association says councils are doing the best within the budgets they have. We are always trying our best to work with parents to ensure they get the right package, and a lot of those plans have been well thought out and are very good for those children. Can you understand, ian, why some parents watching this, those who have been impacted, may be a little infuriated . I understand where the frustrations may lie, and i can empathise with them, but i think weve got to remember that Council Staff have done an incredible job, particularly over the covid period, providing the best possible services for residents given the financial constraints. How problematic are those financial constraints for the outcomes of children . From a National Point of view, we do have these challenges, and obviously it does make Decision Making for councils that much harder, because we do have to balance books. I want to work with government to ensure that local government is fully funded and providing the services that the government are asking us to. The department for education says its already given local authorities additional funding to provide the support parents rightly expect for their children. And there are plans to further boost the total budget to help those with the most complex needs both this year and next. It says a review of send provision is under way. With most young people now back at school, parents of children with some of the most complex special Education Needs and disabilities are still left fighting for an education. Every child needs an education. With the right incentive, they could do really well but nobody is nurturing their talents. Nobody is grasping what talents theyve got. I think its very difficult for people who arent in our position to understand what its like to care for a child with special needs. Its a constant worry. Hopefully, she will outlive us, and we are her only advocates. She wont have anyone. To advocate for her. The system is not set up in the favour of children like sofia with disabilities, who are going to have that disability for their life. Benjamin slippers on. Come on, slippers on. Every mummy or daddy of a special needs child seems to have the same story. Ooh but it is utterly degrading, exhausting. I am blessed, because i have support around me. Without that, i would have had a breakdown. I have people around me telling me, you know what . No, this is the right thing to fight for, and i sit back, take a break, go and do something fun with the children, and then carry on again. Hello. All is not quite safely gathered in just yet with regard to the cereal harvest. Wednesday shaping to be a decent dave you are out and about, whatever youre up to. A cloudy start certainly for the greater part of england and wales thanks to the remnants this weather front gradually travelling its way further south. The word go, its a brighter prospect birth Northern Ireland and england, getting into north of scotland, quite a noticeable breeze, but it takes a time before the last of the cloud and or driven drab of the cloud and or driven drab of wayne pause its way down into the far south where it is still pretty humid across the south eastern quarter, a bit fresher farther north, really fresher farther north, really fresh start to thursday thanks to an area of High Pressure settling things very nicely. So its a dry enough day after that chilly start, we thicken up that chilly start, we thicken up the cloud eventually into the north west of scotland, bits and pieces of rain here, may be a passing shower Northern Ireland but another dry day across england and wales. Northern britain, make the most of it, there is rain to come for friday. This is bbc news. Welcome if youre watching here in the uk, on pbs in america or around the globe. Im mike embley. 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