To be raging that my dd is being so utterly failed?

[SocialistSally]

My dd is autistic, she was diagnosed age 6 (which is very rare with girls). She’s now 11 and been out of school since April, burned out from masking and the pressure of school.

Before that she was working well above expected levels. We are at the draft EHCP stage and have names provisions, but everything is full. Every autism unit, every specialist provision (state and independent) that could meet her needs and still provide the education she deserves.

I’m so angry for her. We’ve only got this far because she is out of education. She shouldn’t have had to wait for her to be in crisis. I’ve been fighting for her since she started school and I’m exhausted. I’ve been ill with the stress of it (in hospital).

She has been utterly failed by the system and she’s only 11 and deserves so much more. And I no longer know what to do to help her.

No it’s a totally shit situation. I don’t describe her as disabled, she is disabled as defined by the Equality Act. She’s autistic and the anxiety and sensory overload means she can’t attend school, I’d say that is disabled.

An 11 year old doesn’t need constant interaction, she plays games, reads, does art all by herself. It’s an awful situation that she shouldn’t be in. It I can’t quit my job, as then we lose our house. What do you suggest?

I have been fighting for months, issuing complaints, writing to my MP, filling in endless paperwork.

@caringcarer you don’t need an EHCP to be entitled to an education. Anxiety and EBSA is a medical condition, just like being in a car accident. Also she does have a draft EHCP. Your dismissal of ‘well there is a school place’ is ableism. Imagine a wheelchair loser not able to go to school through lack of ramps and lifts. It’s th same.

Have you threaten judicial review and then sent a pre-action letter? LAs often ignore parents until they pursue enforcement action.

OP - I am not questioning your parenting or how you choose to describe your daughter. I am guessing you decided to take her out of school rather than school saying that they are unable to meet her needs? Concentrate on the draft EHCP - follow that through and get her some appropriate support. I have always found Directors of Education and MP's really dont care so direct your energies on things you can influence If she was diagnosed at 6 yrs I am not sure why it has taken so long - I guess she seemed to be coping - you say she is a high achiever. I hope things work out.

This isn’t directly what you’re asking I know but I take it you’ve applied for dla for her? Make sure you’re getting everything you’re entitled to - depending on your income level you may be entitled to carers allowance (or may be able to drop hours / income to apply for this which may make things easier for you at the moment) and there is a disabled element of universal credit which you can claim if your child has dla which has a higher threshold than the usual income bracket so even if you don’t normally quality for UC due to income you might if your child gets dla - just worth a consideration.

Unless there has been a policy change, the LA cannot just add classes to existing special schools, or build new schools. They are forbidden from doing so. Only free schools and academies can expand or build new.

This became such a huge issue in our area that the special schools formed a MAT and left LA control, with their blessing, just in order to be able to expand to meet need. This has caused a heap of other problems, but at least the possibility of expansion is there.

I don't expect you to be sympathetic, and nor should you, but you would not believe the complete bind local authorities are in, with huge funding cuts (up to 69 percent), inability to expand provision, and yet all the responsibility to meet need whilst the government, who put them in this position, shakes their head sadly and says LAs are failing parents.

@SocialistSally
I’m not sure where you live but it is the law that local authorities provide education for students out of school for medical reasons for 15 consecutive days. In reality I see students who have been out of school for months, sometimes years and it’s a disgrace.
This could be virtual learning, home tuition, a unit or school specifically for this reason.
I home tutor and work in a unit. We have many autistic children who cannot cope in mainstream, awaiting EHCPs. We even have some with EHCPs although we’re not supposed to because there are no places for them anywhere else. They often thrive with is, it changes their lives and those of their families when it works well.
Where I live you have to be at consultant level and they refer you, other areas may be different. Many parents are in the dark as schools don’t advertise this as they have to pay. Other schools are extremely supportive.

useful link

https://assets.publishing.service.gov.uk/media/5fcf58458fa8f54d59e8b6ed/health_needs_guidance_accessible.pdf

The days don’t have to be consecutive, or even already missed. Provision should be provided once it becomes clear 15 days will be missed (consecutive or cumulative).

Where I live you have to be at consultant level and they refer you

This is unlawful. LAs cannot have such a blanket policy.

@YellowRosesWithRedTips
The 15 days whether consecutive or not is misleading as in reality it takes months even years sadly for something to be done.

Ah I didn’t know it was unlawful, I’m just the teacher, but I can assure you our criteria is consultant’s letter for the vast majority of accepted referrals. It sadly means that many children slip through the net.

It is not misleading. It matters because if it was only consecutive, some DC wouldn’t be eligible. Whereas, cumulatively, they are. It doesn’t have to take months on end/years. Parents can enforce provision and challenge unlawful policies, via JR if necessary - sometimes the mere threat of JR is enough, other times a pre-action letter is required, very few get further than that.

Again, where I live we provide a child with only 5 hours of home/ online tuition per week ( English, Maths and Science)
In the unit they get a maximum of 15 hours.

The problem is what the so called rules are and what really happening out there.

Again, that is not a suitable, full-time education and parents can challenge such unlawful practices. They don’t have to accept unlawful practices.

@YellowRosesWithRedTips
you are clearly very knowledgable, more so than me and what you say is very helpful.
But my reality is what I’ve described, worked in medical education for most of my 30 year career and sadly we offer more now than ever. It’s not good enough is it.

I didn’t take her out of school, she was unable to attend. She tried every single day, but she couldn’t. Occasionally she would manage an hour. But never in the main classroom.

No, it isn’t good enough. Parents shouldn’t have to enforce provision. It shouldn’t be that DC whose parents know the system and can advocate for them get better support. But parents don’t have to accept unlawful policies. They can challenge them.

What have the lea suggested as a school placement? Are you looking a specific placement?

If she is the last year of primary you will find it tough especially now all places have been filled over the summer and there isn't usually much movement in the last year of primary. You can ring around mainstream schools direct, drop dd statment on and ask directly of they can meet her needs

Ypu could also look as last resort boring schools especially those for girls with asd. Lea hate going out of area so if your on a border make sure you look at schools in other areas as your lea will not suggest them

@SocialistSally
I really feel for you, I see many children and parents at the very end of a long hard battle, just to get to us! It’s disgraceful.

At the very least google ‘supporting children with medical needs/conditions’ followed by your LA area for guidance on what is available where you live and then push for it.

Even if as another poster said, it’s nowhere near enough as far as the law says, any tuition or placement would help your child, and may even be the making of her.

Good luck x

OP I’m so sorry, this is so awful for you and your DD. School is my biggest worry and my DD has only just turned 3 and is no where close to being diagnosed yet. How would you be expected to cope if your job wasn’t working from home?!

@Ponche I was signed off with stress

In my LA a child will have no chance of special school or AP if they dont already have an EHCP. Sadly, there are just not enough places for the demand.
When did you first apply for one? Have you considered her going to school part time? We have some children that do this in my school and it’s very successful.

So who is looking after your DD at the moment?

It isn't good enough but councils do get away with so much because parents are either unaware or don't have the energy to fight it. I fought for YEARS and made 2 JR pre-action letters and 2 Ombudsman claims BEFORE the LA conceded that they had to make full time AP. The local offer is consistently seemingly nationwide 5 hours per week and many just don't question it.

Our local PRU and home and hospital provisions have months of waiting lists.

The truth is that it costs LA less money to break the law than it does to comply and as the threat of legal action isn't punitive they have no incentive to comply.

I had multiple discussions with the conservative MP of the time who was sympathetic (she was sacked by Johnson over Brexit eventually) about how backward thinking this is. It is common sense that putting money in education saves money in the long run as educated kids are less likely to be on benefits long term. But the system is screwed.

Ultimately my kids got EOTAS packages including education and therapy and even then it has been nigh on impossible to find even private therapists without a waiting list a mile long.

I had to give up my successful career to get my children's education right, if it as as simple as finding a small independent private school that would be suitable it would have cost our family less than my salary loss. Eventually my second child now has proper full time provision and my eldest has successfully reintegrated into mainstream for 6th form.

The information is out there about what children are entitled to, it doesn't mean that, in the majority they are getting it sadly.

I should imagine that as the OP has removed her DD from school, the LA will go down the line that she DOES have a school she can reasonably attend. IPSEA states that:
“The Courts have confirmed that the LA has a duty to provide education for all children of compulsory school age who don’t have a school they can reasonably attend”
Who makes the decision as to what ‘can reasonably attend’ means is the grey area. The fact that the DD has managed to stay in school for most of her primary years and does not yet have an EHCP suggests that the LA will argue that she CAN reasonably attend a mainstream school.

Its not good enough op and I feally feel for you.
I always find it upsetting how people try and explain this situation away by sort of blaming parents for not nativating the process competently enough. The process itself is shit.