Panorama 2020 E34
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00:00Are you excited to go to school?
00:02Yeah!
00:05For any parent, making sure their child gets a good education
00:09can be a real worry.
00:12It's probably one of the most stressful things I have been through.
00:16So...
00:19When a child has special educational needs and disabilities,
00:23the anxiety can be draining.
00:26Unless you actually experience it,
00:28nobody understands we need help.
00:32In the six months since schools closed to the majority of pupils,
00:36children with some of the most complex needs have been struggling.
00:40No! It's not OK!
00:43I mean, how do you explain lockdown to a child with autism?
00:48And although many are now back in the classroom,
00:51for their families, the anxiety goes on.
00:55Shh!
00:57Tonight on Panorama,
00:59after months of crises in education,
01:02is another one now looming.
01:05The system is awful. It is killing parents.
01:09This time for parents who say they have to fight
01:12for the support their children need.
01:15My child's future hangs on the balance.
01:25DOOR CREAKS
01:36This is Sophia.
01:41Today is a good day for her, but life isn't always like this.
01:49Hey!
01:51Can you jump high?
01:53Sophia is one of more than a million young people in England
01:57with special educational needs and disabilities, or SEND.
02:02That's great!
02:07Hello! Do you want to see the doggy? Yeah!
02:12So, Sophia's conditions, how do they impact her on a day-to-day basis?
02:18They impact her whole life, really,
02:21and the way she interacts with the world.
02:23So she needs a high level of support to keep her safe.
02:26She doesn't have a communication system, she's non-verbal,
02:30and she has profound sensory needs as well.
02:33But with the right support, there's absolutely no limit
02:36on what she can achieve.
02:38Of course, every child is different, and the same goes for SEND children.
02:43Many are supported in mainstream schools using existing resources
02:47but Sophia is one of a fifth of those whose needs are so complex
02:51that she requires more intense, more costly support
02:55set out in what's called an Education, Health and Care Plan.
03:01She's assessed most recently by educational psychologists
03:05that her cognitive age is similar to a child
03:08between the ages of eight months and 20 months,
03:11but she is, in fact, eight years old.
03:14It must be hard as parents.
03:16Yeah, just the everyday normal activities that you would think
03:20come easy to the average family don't really to us.
03:23We have to strategically plan everything we do throughout the day
03:28to make sure everything we do is suitable,
03:31is a suitable environment for Sophia, really.
03:35Since lockdown, things have been really tough for the family.
03:39While schools close to the majority of children,
03:42the government said that the most vulnerable,
03:45including those with complex special educational needs,
03:48could still attend subject to a COVID-19 risk assessment
03:52showing it was safe for them to be there.
03:55What was your understanding of your entitlements as parents?
03:59We kind of assumed everything would run as it did pre-lockdown.
04:05We thought she would continue in a routine of going to school.
04:09It then very quickly became clear
04:12that that wasn't going to be as easy as that.
04:15The family was sent a flowchart similar to others used by schools
04:19and councils elsewhere in England.
04:23So the very top, it says,
04:25am I a critical worker in the COVID-19 response?
04:28And you are no, right?
04:30We are no, correct, yeah. So there's a yes or no.
04:33So we are no.
04:34So it leads to keep your child at home and don't send them into school.
04:38That was all we had to go off, really.
04:42Stuck at home during lockdown, Sophia's mental health started suffering.
04:47I couldn't have predicted what happened to her
04:49in such a short space of time.
04:51She deteriorated.
04:53We sort of got the impression that we weren't being believed.
04:58So Becky and Tom decided to film her.
05:01Some of what they recorded is upsetting.
05:05Shhh!
05:09And even after the lockdown restrictions were eased,
05:13Sophia still struggled.
05:15It's horrible to even watch now.
05:18Never mind. At the time.
05:21She would do this multiple times a day.
05:30She became quite violent
05:32very quickly,
05:34which was never her.
05:37OK, darling, I know.
05:39She would harm herself as well as others.
05:43She would pull chunks of her hair out.
05:45She would bang her head against the wall,
05:48bang her elbows against the wall.
05:51She was covered in head-to-toe and bruises that were self-inflicted.
05:57So it really did get to a point where you had no option
06:00but to physically restrain her.
06:04To be a grown man physically restraining a seven-year-old girl,
06:09it's, erm...
06:11It's not nice.
06:18If your child's not well and your child is in pain...
06:23..then there's nothing that you can do.
06:26It's very difficult for anything else to fall into place,
06:29so it's impacted our entire family.
06:36Sorry.
06:43Liverpool City Council told Panorama
06:46that it's aware of the additional pressures and challenges
06:49that COVID-19 has placed on children and families
06:52and that its communication with parents hasn't always been good enough.
07:01Across England, other parents have been feeling the pressure too.
07:06Rex?
07:07Some sent videos.
07:10Hi. Are you OK?
07:13I'm exhausted. We normally have pretty much...
07:17..pretty much full-time support,
07:20so that we can actually do things like go to the loo
07:24or make a cup of tea or, erm, breathe.
07:29So my current life looks like this.
07:35No lockdown!
07:38I mean, how do you explain lockdown to a child with autism?
07:43He smashed a wooden chair against a door into pieces.
07:53In April, on average, just 4% of SEND children
07:57with education, health and care plans were going to school,
08:01either for all or part of the day.
08:05And although that number rose to 27% by July...
08:08I am not!
08:10..families struggling at home without support...
08:13No! ..felt abandoned.
08:16I don't particularly feel like I've had any kind of support
08:19from anybody during lockdown.
08:22It's always been me doing the chasing
08:25and my daughter's mental health.
08:30It's... It's really bad. It's really, really bad.
08:35But parents have been complaining about the system
08:38since long before lockdown.
08:41The impression that I get is that my child and children like her
08:45are an unreasonable drain on resources.
08:51In 2014, the number of children with autism
08:55In 2014, David Cameron's government overhauled SEND provision,
09:00saying it wanted to improve services for young people
09:03from birth to the age of 25.
09:08Families were promised that where a young person
09:11might have a need for more support
09:13than is currently available in school,
09:15their child would be assessed and the parents involved.
09:19Local authorities are responsible for managing that.
09:24This is the education, health and care plan
09:27that the local authority formulated for my daughter, Sophia.
09:31It's difficult to plainly say why it is incorrect.
09:35There's not much of it that is correct, to be honest,
09:38which surprises me because it's a legal document.
09:41It's absolutely worthless.
09:43It has no value at all to my daughter's education.
09:46The local authority, I feel their priority is keeping costs down,
09:50whether that means meeting my daughter's needs or not.
09:53Plans are supposed to be tailored to the needs of each individual child.
09:58There are parts of it that don't relate to my daughter at all.
10:01Sophia is an eight-year-old girl and just on this page alone,
10:05there's three instances where they've referred to her as his.
10:09So we've got here his progress, his education, his needs.
10:13So I believe that that is copied and pasted from a document
10:17that was originally written with another child in mind that was a boy.
10:24It's expensive to provide the kind of intensive support
10:28that many children with complex needs have.
10:31It can cost £15,000 a year to support a child
10:35with a moderate learning difficulty
10:37and as much as £45,000 a year
10:40for a child who has profound and multiple difficulties.
10:45No go-go.
10:47No, no go-go.
10:48The walk-walk.
10:49The walk-walk, yeah.
10:50That's a good doggy.
10:51Yeah.
10:52Four-year-old Benjamin starts school this week in London.
10:55Are you excited to go to school?
10:58Yeah!
11:01Benjamin has Down syndrome.
11:03He has narrow airways, so choking is a risk.
11:07And he has sensory issues that mean problems with his hearing.
11:12And he has sensory issues that mean pretty much anything he sees
11:16he wants to pick up to touch and taste.
11:19If left unsupervised, he would just wander off or lick things
11:23and put things in his mouth.
11:25Literally anything?
11:26Anything, yeah.
11:27Yeah, so we do have to watch him constantly.
11:30After what mum, nurse, have felt was a long and overly complicated process,
11:35she finally got an agreement for Benjamin's needs to be formally assessed.
11:40And what was that process like?
11:42Well, painful and not straightforward.
11:45I still don't understand the process, even though I've been through it.
11:49Benjamin was assessed by a teacher and physiotherapist.
11:54OK, chew, chew, chew.
11:57Chew.
11:58Both detailed the fairly extensive support they felt he needed.
12:02Good boy.
12:03And an educational psychologist recommended he have
12:06a one-to-one teaching assistant.
12:09How would you describe the plan?
12:11Poor. Utterly poor and not fit for purpose.
12:14There was something incorrect on every page.
12:17Basic information such as his ethnicity.
12:20He was put down as white British.
12:22He is obviously not white British and they'd met him, so knew that,
12:28and there was hardly any provision on it.
12:30So instead of one-to-one support for 32.5 hours,
12:35which is how long Benjamin will be at school per week,
12:38there was provision for 22.5 hours.
12:41So there was 10 hours missing.
12:43The aliens are having a party.
12:45Benjamin, don't lick it.
12:50If he's allowed in school without that one-to-one support,
12:53what could happen?
12:55Worst-case scenario, God forbid, is he could die.
12:58He could choke on something and die.
13:02The Royal Borough of Greenwich says it recognises the importance
13:06of collaborating in drawing up education, health and care plans
13:10for young people, and every family is given the opportunity
13:14to comment on the plan before it becomes a legally binding document.
13:23In Liverpool, Becky and Tom have decided their only option
13:27is to appeal the plan drawn up for Sophia.
13:30I really don't feel like I have a choice.
13:33All of us, not just my daughter, we get one shot at childhood,
13:36one shot at education.
13:41In the six years since the system was changed,
13:44the number of appeals against the content of education,
13:47health and care plans increased from 453 to almost 4,000 in 2019.
13:58For parents, appealing can be emotionally draining and expensive.
14:04With local authorities spending an estimated £40 million last year
14:08on lawyers, expert reports and testimony
14:11to defend cases brought against them at tribunals,
14:15many families feel they need to buy in help too.
14:21Ali Fiddy runs a charity that helps parents through the process.
14:26When they are faced with a local authority
14:29who is coming armed with various professionals and lawyers,
14:33they often feel they've got no choice
14:35but to arm themselves with something similar.
14:38They will often pay for those on a private basis,
14:41and we have heard of astronomical fees being charged
14:45by a range of both solicitors and non-solicitor advocates.
14:51Sophia's appeal goes to tribunal later this month.
14:55We did look into legal representation.
14:58We were quoted a capped fee of £9,000,
15:01and that was before commissioning any specialist reports
15:04which we would need for evidence.
15:06I feel that that just proves how unfair the system is.
15:09It's not in the favour of parents and families,
15:12and it's certainly not in the favour of these vulnerable young children.
15:18In the summer term, Sophia did go back to school,
15:22although her parents believe she still didn't have all the support she needed.
15:29Thank you, Mother.
15:33Liverpool City Council has told Panorama
15:36that aspects of its send processes and provision
15:39have fallen short of what it wants to provide for all who experience it,
15:44and says it apologises to those parents.
15:53Across England, in the school year ending in the summer of 2019,
15:57councils lost 92% of all appeals heard by tribunals.
16:03Each year, around a third of the appeals lodged
16:06are brought by parents trying to get their children's needs assessed.
16:14The system is awful.
16:16It is killing parents, it is damaging parents,
16:20their mental health, their mental wellbeing.
16:24It's just wrong, completely wrong.
16:28Although the law says children who might have a need should be assessed,
16:32there's growing evidence of councils finding reasons not to.
16:37Panorama has heard from parents who feel driven to despair.
16:45It's really hard and it's very frustrating.
16:47It's cost me every penny I have. I have nothing left.
16:50Which upsets me a bit because I've worked damn hard.
16:54Sorry. It's just really frustrating.
16:59I've worked so hard and I have nothing to show for it
17:02because I've had to fight to get myself an education.
17:08When did they start deciding that children are less than
17:14and that they don't matter?
17:21There we go. Put your hand out flat. Put it out flat.
17:24There we go.
17:28Hayley Harding runs a campaign group for parents of children
17:31with special educational needs and disabilities in Sutton, South London.
17:39She set the group up after her son Matthew, who was four at the time
17:43and had just been admitted to school.
17:45She set the group up after her son Matthew, who was four at the time
17:49and had just been diagnosed with autism,
17:51was told he didn't need an assessment.
17:55It was an email which was saved under the wrong child's name.
17:59It had please delete in brackets left in it.
18:01And they said, we're rejecting you for an assessment.
18:05It's probably one of the most stressful things I've ever been through.
18:09The email came from Cognus, an independent company
18:12that had been set up by Sutton Borough Council to manage its SEND provision.
18:18Hayley put a call out on social media
18:20to see if other parents in the area had had similar experiences.
18:25Within two days, I had over 100 parents join,
18:27all coming to me saying, thank goodness somebody's actually doing this.
18:30I thought it was just me. I don't feel alone anymore.
18:33And now the group stands at 330.
18:37Hayley, a lawyer, started to investigate,
18:40finding that at the start of 2019,
18:42Sutton Borough Council had turned down 68 of the 108 requests for assessments.
18:49That's almost three times more than the national average at the time.
18:54She also discovered a document that suggested
18:56there was a drive to reduce demand for assessments.
19:01So this was the SEND strategy which was signed off in 2018.
19:05And as you can see, one of the key targets for autumn term
19:09was reducing demand for assessment.
19:12It's there in writing.
19:13And we know of a 35-page booklet which they produced,
19:16and saying, unless you meet these 35 pages of criteria,
19:20you're not going to get an assessment.
19:24Sutton Borough Council has since withdrawn the policy and the booklet.
19:28In March 2018, its SEND services failed an inspection
19:32by Ofsted and the Care Quality Commission.
19:35Earlier this year, after another inspection,
19:38it was judged to have made sufficient progress
19:41in addressing the weaknesses identified.
19:45Sutton Borough Council has told Panorama
19:47the majority of families of children with clans in the area
19:50are positive about the service they receive,
19:53and it's set up meetings with anyone who isn't.
19:59The number of refusals has been rising steadily ever since.
20:03Every year since the system was rolled out.
20:06Across England, more than 18,500 children
20:09were refused assessments last year.
20:12And almost 80,000 have been refused
20:15since the system was introduced six years ago.
20:19The local government ombudsman investigates allegations
20:22of maladministration against councils.
20:26In the last school year, an unprecedented 91% of complaints
20:31made about council decisions
20:33on education, health and care plans were upheld.
20:37The House of Commons Education Select Committee
20:40has investigated special educational needs provision.
20:45The legislation makes it very clear
20:48that the child must be the priority.
20:53Is the child the priority at the moment?
20:56I think that at the moment, the system is very clear
21:00that at the moment, the system mitigates
21:03against the child being the priority.
21:05Because what we've created is an adversarial system,
21:09a treacle of bureaucracy for parents to navigate through.
21:14What seems to happen is it's not the child that is at the centre,
21:19it's the process, which is the bureaucracy,
21:22which seems to be at the centre.
21:25So that unless you are sharp-elbowed or well-heeled
21:29to navigate the system, you won't get that proper care
21:32necessarily for your child.
21:38The local government association represents councils in England.
21:43I don't recognise that, because I think that what we want to try
21:47and do is make it as simple and as efficient as possible for parents.
21:51However, there are criteria that have to be assessed,
21:54and that may be where some parents are finding
21:57that they're having stumbling blocks.
22:04When Tom Brown moved to Kent with his wife and three children,
22:08he thought he had the wherewithal to navigate the system.
22:12I mean, being a lawyer, I'm very good at keeping evidence,
22:16I'm good at pushing and pressing,
22:18because I'm trying to get some help for my kids.
22:22Before the move, his two sons, both of them autistic and with anxiety,
22:26had needs assessments, and both had been given plans
22:29outlining the support they should have.
22:33The educational health care plan, it was literally issued just before we moved,
22:37and we were advised that they would be transported across to Kent.
22:42So we thought, great.
22:45When they got to Kent, the family felt the care outlined in the plans
22:49wasn't provided, so Tom put in a formal complaint.
22:53At a mediation meeting with the council, he says he was made an offer.
22:59We were offered a cash payment of £100,000.
23:02There were no limitations on how we spent it.
23:05The only condition was that we provided a proof of residence
23:08that we had moved out of Kent,
23:10and also that we agreed not to return to Kent for five years as residents.
23:16They're offering you £100,000 to leave the county
23:20and become somebody else's problem.
23:22Basically, yes.
23:23And I was told that we couldn't return to Kent for five years.
23:27How would that help your children?
23:29Because maybe another local authority would be able to help us.
23:32How does that feel to you?
23:34I'm still staggered by it, I must admit, to this day,
23:37why they would use that money to get us out of the county
23:43rather than use the money to help my kids.
23:45It feels like a huge waste of public money.
23:50A draft agreement was drawn up,
23:52which Tom eventually decided not to accept.
23:56Well, the sad thing is to say I'm not shocked by it.
23:59The reason I'm not shocked by it is because we know
24:02that councils have been basically bending the rules.
24:05It's got to be stopped,
24:06and it's just a symptom of how the system is not working.
24:11Kent County Council has told Panorama the offer was made
24:15because it understood the family wanted to move.
24:18Although Tom says they didn't.
24:21The council says it has struggled to find common ground with Tom
24:25and it believes it can meet the needs of both boys in Kent schools.
24:31It says the mediation failed, no amount was agreed
24:35and no monies were exchanged.
24:38And it says it puts particular emphasis
24:40on increasing the quality of parental engagement.
24:44The local government association says
24:46councils are doing the best within the budgets they have.
24:51We're always trying our best to work with parents
24:54to ensure they get the right package,
24:56and a lot of those plans have been well thought out
24:59and are very good for those children.
25:01Can you understand, Ian, why some parents watching this,
25:04those who've been impacted maybe, are a little infuriated?
25:08I understand where the frustrations may lie,
25:11and I can empathise with them,
25:13but I think we've got to remember that council staff
25:16have done an incredible job, particularly over the Covid period,
25:20providing the best possible services for residents
25:23given the financial constraints.
25:26How problematic are those financial constraints
25:28for the outcomes of children?
25:30From a national point of view, we do have these challenges
25:33and obviously it does make decision-making for councils
25:36that much harder because we do have to balance books
25:39and I want to work with government
25:41to ensure that local government is fully funded
25:44and providing the services that the government are asking us to.
25:52The Department for Education says
25:54it's already given local authorities additional funding
25:57to provide the support parents rightly expect for their children.
26:02And there are plans to further boost the total budget
26:05to help those who need it most.
26:09With the most complex needs both this year and next,
26:12it says a review of SEND provision is underway.
26:18With most young people now back at school,
26:21parents of children with some of the most complex
26:24special educational needs and disabilities
26:27are still left fighting for an education.
26:36Every child needs an education.
26:38With the right incentive, they could do really well.
26:42But no-one's nurturing their talents.
26:44Nobody's grasping what talents they've got.
26:49I think it's very difficult for people who aren't in our position
26:53to understand what it's like to care for a child with special needs.
26:58It's a constant worry.
27:00Hopefully she'll outlive us and we're her only advocates.
27:04She won't have anyone.
27:09To advocate for her.
27:13The system is not set up in the favour
27:16of children like Sophia with disabilities
27:19who are going to have that disability for their life.
27:23Benjamin.
27:25Slippers on.
27:27Come on, slippers on.
27:29Every mummy or daddy of a special needs child
27:33seems to have the same story.
27:38It is utterly degrading, exhausting.
27:43I am blessed because I have support around me.
27:47Without that, I would have had a breakdown.
27:50I have people around me telling me,
27:52you know what, no, this is the right thing to fight for.
27:55And I sit back, take a break,
27:58go and do something fun with the children
28:01and then carry on again.
28:07MUSIC
28:37.