Can’t stop crying and don’t know what the hell to do!

[SlobbySobber]

I’ll probably get told IABU but still…,,,,,

DTS2 (age 19) has Autism (on the more able end of the spectrum) and a learning disability. He exhibits challenging behaviour and has mental health issues. It has been an extremely difficult and stressful experience raising him as well as our other 3 DC.

I had to give up my career when he was younger as it was too much to work and deal with all the issues at school, getting him an EHCP, meetings. etc. He has moved educational placements 4 times in the last 4 years as they couldn’t cope with him due to his social anxiety, lack of engagement and refusal to follow instruction. He has no qualifications, no independent living skills and there’s no way he could work. He can’t do an internship or training course due to his behaviours. He was kicked off work experience as well.

Last educational placement kicked him out in June and he has basically been sleeping all day and staying up all night on his PS4 since then. Won’t go out or do anything. I’ve been desperately trying to find him a suitable placement in that time. Local Education Authority don’t care that he had no provision despite him having an EHCP which entitles him to an education.

I finally found him a residential college in early November that said they had no concerns about admitting him after I gave them his history. It was 3.5 hours away but amazing in terms of support offered, facilities and peer group. Stuff like on site psychologist, psychiatrist, physio, animals and calming environment in acres of countryside, lots of social activities. I really thought it could turn him around and was what he had needed for a long time.

We went down to see it and got the Local Education Authority to consult formally with them. I expected a battle with the LEA as I knew they wouldn’t want to fund it so got a solicitor ready and was prepared to fight to get him in there.

I found out today the college has decided they can’t admit him due to his behaviours despite knowing about them before and having no concerns and also bring specialising in Social, Emotional and Mental Health. They told the LEA 2 weeks ago and they didn’t inform us.

I am just devastated and have been sobbing ever since! The years of stress, of phone calls about him from school and college, meetings where I was made to feel like a incompetent parent, exclusions, having to pick him up from school, battling the LEA, him not learning anything, the constant stress of his behaviour and worry about how he’ll end up. I had to get in the shower so youngest DC didn’t hear and had a panic attack (haven’t had one for years). It’s like years of repressed emotions flooded out! I’m not soneond who cries and consider myself a tough cookie but this has broken me. I’m shocked at my reaction myself!

For DS as the place was perfect for him and could have put him on another trajectory and changed his life, and for myself as I really thought I’d finally found somewhere that would work for him, he’d be out the house and I could stop worrying about him and get in with my life. I’m just done with it.

I’ve actually recently gone back to work and I want my life back but I’m constantly worried about him and can’t get fully into it.

I now have to search again for a non existent provision for him which could take months and in the meantime his mental health is worsening and it’s like he’s wasting away. There just is no where else to put him!

I just don’t know what to do!

AIBU?

I'm so sorry OP. Life is cruel at times. I really hope things turn around for your family.

The other option to consider later is looking for suitable supported living setting and a day placement. There are some good places offering farm placements / outdoor learning that can be very nurturing.
My ds has many challenges and it is a rollercoaster but he no longer lives at home as I simply could not cope any longer. It is OK to admit that. Over the years I have come to understand that I have gone well beyond normal parenting and still do. It is OK to have to say that you need to stop a little

www.redballoonlearner.org/about/who-we-help/

Admissions Criteria

We provide education for young people who study at secondary school level (KS3 and KS4). Most students are aged between 11 and 16. Occasionally, we work with young people up to the age of 21 to help them achieve secondary school qualifications.

@cansu

The other option to consider later is looking for suitable supported living setting and a day placement. There are some good places offering farm placements / outdoor learning that can be very nurturing. My ds has many challenges and it is a rollercoaster but he no longer lives at home as I simply could not cope any longer. It is OK to admit that. Over the years I have come to understand that I have gone well beyond normal parenting and still do. It is OK to have to say that you need to stop a little

Agree He is adult Look at locAl day programs Farms Etc Will he engage if taken to a supportive place? What is his cognitive level? Find out about supported living locally What places are being commissioned? Get in touch with ss 16 to 25 team for young people with disabilities

www.ipsea.org.uk/types-of-schools-and-other-settings
Here ian some info about s41 schools. However, if they are taking longer than the statutory timeframe, I would definitely look to Judicial Review. SOSSEN are good for this, they also hold drop in sessions for free legal advice as opposed to IPSEA.

If it is the school refusing the young person I am not sure how hard you can push?
Look at other options too

I mean it may be a case of building a program locally

I have adult DC too. Going on medication for anxiety really calmed down my eldest's anxiety & in turn aggression, violence & challenging behaviour. I would look into this if you haven't already as the difference can be miraculous.

I am on very good terms with an IPSEA advisor and what she said was that the LA must secure a place at the school of your choice and the only way this can be legally dislodged is if the school is able to show that educating him in THAT class is “incompatible with the effective education of others or an inefficient use of public funds.” That’s the legal test. The school can’t just say “we can’t meet his needs” they have to be very specific as to why, and also demonstrate that they wouldn’t be able to meet needs even if all reasonable steps were taken.

So in short, call an emergency review and appeal section I, and force the LA to secure the place.

I'm so sorry that you're in this situation, it sounds so tough.

I'm at the very beginning of the EHCP process for my ASD/PDA daughter and have signed up for a monthly membership of £20 with SEND Family Instincts. I think you can cancel any time.

If you can afford it, look them up. They are on FB too - loads of live vids and useful info. I know a few people who have used them and secured placements/provision for their SEN kids that would have been a slog/impossible solo.

And take time to recoup, this stuff is such a marathon. We need all the strength we can get X

www.sendfamilyinstincts.com

IPSEA and SOSSEN are both charities who do this not for profit.

I've used them too. SOS!SEN were great, but I paid for my phone consultation with them.

Good to have lots of things in your armoury. This stuff is such a minefield.

If child is nineteen though there is no need to use charity for support or pay for support groups the child will be entitled to Legal Aid in their own right and this will fund an educational law firm and independent SALT, OT and Ed Psych assessments free of charge. It will be these assessments that provide the evidence and help identify the placement the child needs to win at Tribunal because county wide parents win in 93% of cases (99% if in Derbyshire)

Oh my goodness, no wonder you can't stop crying.

It sounds as though you and all your DC have been failed by the system.

Is it worth taking what shuffleuplove and duvetday to your MP?

I wish you all the luck in the world and hope that you get something sorted for all your sakes.

Have you looked on the natspec website?
It lists all independent specialist college providers? There may be other colleges on there that will say yes?

I don't have any experience in this area but is it maybe worth getting in touch with your MP?

My heart breaks for you, Op. The constant battles for diagnosis, EHCP, DLA etc is exhausting and I am not surprised you feel broken by this.

No real advice other than have you spoken to IPSEA? Maybe they can offer some guidance and ideas about the way forward.

In the meantime, if possible, take a few days to look after your own well-being this Christmas. Step back and just have some quiet time to recoup your energy. If that means leaving DS on his gaming gadgets for a few days, so be it. You're playing the long game....

Apologies, I see you have struggled to get hold of IPSEA. I know demand for their service is massive.

Whereabouts in the U.K. are you? Is there a Families In Focus charity near you? We've had some very helpful support from Essex Families in Focus before.

I'm so sorry. I can't imagine what this must be like.

There is one thing I douo have experience with, though. You mention he is 19 - I take it you're in your early 40s? So it may be perimenopause is starting to make its presence felt. Check in on how you are - it may have strong impact on how you're feeling and can be helped.

@SlobbySobber As it is a section 41 institution unless the LA must name your preferred placement unless they can prove:

• The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person; or
• The attendance of the child or young person would be incompatible with the provision of efficient education for others; or
• The attendance of the child or young person would be incompatible with the efficient use of resources.

The bar for incompatibility is relatively high, it is more than an impact on, adverse effect or prejudicial to. If the LA cannot prove one of the above the LA can, and must, name the school regardless of the school’s objections.

If it has been longer than 8 weeks since you had the amended draft EHCP tell the LA unless they finalise without delay you will be forced to begin Judicial Review proceedings because they have breached the statutory timescales and are frustrating your right of appeal.

Once you have the finalised EHCP appeal. Don’t bother with mediation, LAs use it as a delaying tactic. If they are going to concede they will do so regardless of whether you actively partake in mediation or just get the certificate. As Hiredandsqueak posted, DS will be entitled to Legal Aid.

Also, even if section I is blank the LA are still responsible for ensuring any provision specified and quantified in section F is delivered.

Thank you @Imitatingdory. We got the Final EHCP yesterday (8 weeks was up on the 31st) after I’d chased it again.

They have not named the residential college as I expected so I will have to go Tribunal!

They have named an outreach provision for the rest of this academic year and then the college 20 miles away from Sept 22. It is an absolute pisstake as I’ve been begging them to find him a provision since September and even suggested the outreach provision as an interim measure but they did absolutely nothing until I found the residential place and asked them to name it in November.

The outreach provision hasn’t even contacted us to tell us when they will start working with DS. That will be another two changes of provision in a year! I know the local college is not suitable as it is similar to the one who couldn’t meet his needs which he finished at in June. How he’s going to get there I don’t know as it takes over an hour and two buses which he won’t be able to figure out on his own and I’ve just started a new job after years of being his carer and can’t get him there.

I’m thinking of saying I can’t have him at home anymore (he’s 20 in Feb) so if he wasn’t in residential college, he’d have to be in supported living accommodation so that would be additional costs to offset some of the expenditure of the residential college. Not sure about that though as I don’t want to relinquish him to Social Care and be forced into putting him in supported living if we lose the tribunal? He’s definitely not ready for that yet.

I’d already decided not to do mediation because as you said it’s just wasting time but I have to wait for them to speak to me first and then send a mediation certificate before I can lodge the appeal which is ridiculous and will probably take us well in January.

I’ve put in a complaint to the Local Government Ombudsman about the 16 week delay to get the draft EHCP.

I’m feeling better now and will be in full fighting mode come January!

but they did absolutely nothing until I found the residential place and asked them to name it in November.

Typical LA games. While the LA can get away without providing anything they will do so. The residential college is significantly more expensive, hence only offering the outreach provision when you put the college on the table. The majority of appeals are upheld. You are unlikely to lose at Tribunal if the LA’s proposal is outreach provision, especially if DS is at risk of otherwise needing supported living which would be even more expensive. Although, have you looked at other potential residential colleges?

It in the meantime ensure the outreach provision meets all DS’s needs and provides a full time education.

Have you looked at the LA’s post 16 transport policy? Contact SENTAS with it as many post 16 policies are unlawful. If it’s suitable have you looked at independent travel training.

LA can name a S41 school, whereas if the school was wholly independant it could not. Do look into the national trial, now called extended powers, I think. You can get some social care and health recommendations also.

Someone on this thread may be able to correct me if I wrong, but if you were costing up the residential college you could compare these costs to the supported living costs under social care also (happy to be told I am wrong).

Do appeal, it really is worth it.