Advice on improving an EOTAS package for a lonely SEN child

[unstablefeeling]

Looking for some advice from people with EOTAS packages. DS12 has been on EOTAS for a year. He has 8 hours tutoring at home, which usually ends up being about 4-5 hours per week because he can't cope with longer than that (it's two blocks of 4 hours which in hindsight was a bad idea but I haven't been able to change it). He also has one hour horse riding/horse care at a local stables, which he enjoys, and 2.5 hours at a local forest school type provision which he occasionally enjoys. I have to stay with him for all of the above as he doesn't feel comfortable without me yet. He is also entitled to 10 hours of OT per year, which due to waiting lists hasn't started yet. LA refused private OT. He also has 2 hours Mindjam, but after a year it's just getting to the point of them talking about the game, they don't talk much, it's very slow progress. He doesn't qualify for SALT on the NHS anymore, although he did have it on his EHCP when he was at a special school. Was for communication rather than speech.

We need to decide on the package for next year and it's really hard to know what to do for the best. He's so lonely with the current package. He is desperate to have some friends, but the only provision that currently involves other children is the forest school one, where he has 1:1 and doesn't mix with the other children. He needs help to make friends, and I believe he probably needs more than 2.5 hours a week with the same group of people to feel comfortable enough to talk to them, but he doesn't want to do more than one session a week because he finds it stressful. He finds the other children a bit scary/naughty.
I've contacted pretty much every EOTAS provider in our county that I can find online, but I can't find anything that would work for him. I feel like he needs more than most of these settings can offer, as in, specialist support from trained professionals who understand his complex mental health needs and can help him develop socially. Nothing we've had this year seems to have improved his confidence or self esteem at all, and now he is out of burnout he is just really really lonely.

People who have really good EOTAS packages, how did you get them? How did you know what would work for your child? He hasn't been seen by a EP or SALT since his EHCNA when he was 7, would it be worth me paying privately for an assessment? I honestly don't know how to help him. He is so distressed with how lonely he is. Can anyone give me some good advice?

@unstablefeeling That sounds really tough for your DS. My DS does not have EOTAS but we have been through periods of avoidance and isolation.

What helped my DS was to get him in to extracurricular clubs. We started off very small and when he found something he enjoyed, he gradually built up. He still doesn’t have many friends but it’s enough to keep him going socially.

Would that be something your DC could manage? Have you spoken to your LEA to ask whether they can recommend anything that might help your DS socialise more?

@SeeMeNowToo thanks for your response. The LA just suggest the usual Alternative Provisions, which he is trying/has tried but they either say they can't meet this needs, or they are too far away, or he doesn't want to go to them.
There aren't any extra curricular clubs that I can think of that he would cope with. He tried our local church youth group, lasted 10 minutes (there were 4 other kids there) and then ran home and had nightmares about it for days afterwards. He tried Cubs but it was too noisy so he won't try scouts. He did a kids class at the local gym for a while but now finds it too noisy/the other children too annoying. He doesn't like sport or chess. He can't cope when other kids break the rules or make noise. I can't think of anything else he could try. He does like Warhammer but our local shop says he has to bring his own friends to play with, they can't do games for kids who don't know each other, and he doesn't know anyone else who plays. I can't think of anything else that would work for him. Any ideas?

People who have really good EOTAS packages, how did you get them?

I have 2 DSs with comprehensive EOTAS/EOTIS packages. They have the support they do because we appealed and then enforced the EHCP.

How did you know what would work for your child?

A mixture of extensive evidence showing their needs and the provision required, experience, having flexibility in their packages to adapt as needed and be responsive to their needs, and slightly adjusting their packages over the years.

He hasn't been seen by a EP or SALT since his EHCNA when he was 7, would it be worth me paying privately for an assessment?

EOTAS/EOTIS packages are based on the provision in F of the EHCP to meet the needs in B of the EHCP. In turn, B&F are based on the evidence. So, updated evidence will be required. Whether you should do that independently now or not depends on your individual circumstances and DS’s individual case.

I've contacted pretty much every EOTAS provider in our county that I can find online, but I can't find anything that would work for him.

Don’t rely on only those you can find online. Speak to others locally who have EOTAS/EOTIS. There are ones who won’t appear on a search online. Depending on your LA, you could look at their AP catalogue/approved providers list if they have one. However, despite what some LAs say, you are not only limited to those on the list/approved. You aren’t limited to APs in your LA, either. Many have to travel for a suitable AP. If you want to post where you are or namechange and post, you may get ideas.

Some APs offer warhammer and similar. It is worth asking around for some of the lesser known provisions.

A year is still early days.

He has 8 hours tutoring at home, which usually ends up being about 4-5 hours per week because he can't cope with longer than that (it's two blocks of 4 hours which in hindsight was a bad idea but I haven't been able to change it).

Do you think the tutor is the right person? What type of tutoring is it? It doesn’t have to be academic tuition. It doesn’t have to be formal learning. It can be child led. You say you haven’t been able to change to timings, what is the wording in section F? Even if the wording in F leaves a lot to be desired, the LA still has a duty to ensure DS receives a suitable full-time education under section 19 of the Education Act 1996.

He also has one hour horse riding/horse care at a local stables, which he enjoys,

If DS enjoys this, what about looking at equine assisted learning/therapy? Some have this in groups.

2.5 hours at a local forest school type provision which he occasionally enjoys.

What parts of forest school is it that DS enjoy or doesn’t enjoy?

Mindjam

Do you think the mentor is the right fit? Does DS enjoy gaming? If so, do you have an in person gaming AP within travelling distance?

I have to stay with him for all of the above as he doesn't feel comfortable without me yet.

Do you have staffing in F to be able to build up to having someone else eventually take over your role? I’m not saying they do that now, but finding the right person to work alongside you to start building the relationship is important.

He is also entitled to 10 hours of OT per year, which due to waiting lists hasn't started yet. LA refused private OT.

You need to look at the exact wording in F. If OT is detailed, specified and quantified in F, the LA must provide it. Waiting lists are irrelevant. It isn’t optional. It can be enforced. If the LA can’t otherwise provide it, they must find independent provision (either directly or via direct payments).

He doesn't qualify for SALT on the NHS anymore, although he did have it on his EHCP when he was at a special school. Was for communication rather than speech.

Is SALT still in F of the EHCP?

What else does DS enjoy doing?

Is online provision suitable for him? Would he join AP &/or groups online - structured groups if better for him?

How is DS in the community? Does DS have any provision to access the community? Not necessarily social groups, but things like trampolining/inflatable park, pottery, eating out, visiting a museum/crazy golf/cinema/theme park/whatever?

You say DS doesn’t like sport, is it sport he doesn’t like, or team sports? Would he go to the gym or go climbing, work with a PT at home?

Does DS have any input from a clinical psychologist?

Thanks so much for your comprehensive response.

Regarding the needs in section B, these are still based on the EP report from 4 years ago. The recent EHCP was put together by me and the EHCCo and then the admin representatives from the various provisions he currently has, so none of them have met him. I feel like it's just me making it up. Current provisions aren't experts in child psychology. None of them really know what would help. County have never offered further assessments, I know they can't cope with all the new needs assessments they are doing. So perhaps paying privately is my only option.

re APs I don't think our county has an approved list. I'm on a FB group for EOTAS in the county but haven't seen anything suggested there other than the farms or places that have said they can't meet his needs. We are in Buckinghamshire.

Re: OT
how do I enforce this? LA say NHS is responsible, NHS say waiting lists are long. I asked for private, LA said no. What's the next step?

re SALT no they took SALT out of the EHCP because the NHS wouldn't provide it.

Re Community access he won't go anywhere busy, but he will occasionally go out for meals or to the cinema or a shop to get something he wants. As long as there aren't too many other people there.
It's in his EHCP that he'll have a mentor for this, but it hasn't happened. I think his tutor was supposed to take on this role too, but he refuses to leave the house with her. He gets on well with her but only wants to do "learning" with her. I've asked again for a mentor for next year.

Re clinical psychologist he is on a waiting list to have psychologist therapy via CAMHS specialist neuro support team, no idea when this will start. I'm hopeful this may help identify ways to help him, maybe I should wait for this before I go down the private assessment route.

section B

If section B is poor, F is likely to be too. If F is poor, the EOTAS/EOTIS package will be too.

You can use the AR process to request updated advice and information. Although you may still end up appealing and seeking independent assessments as part of that.

You could request a reassessment of needs but personally I wouldn’t.

OT
The first step is looking at the EHCP. You need to check what section OT is in and the wording. OT should be in F. If it is, you need to see if it is detailed, specified and quantified or if the wording is vague and woolly. If it is the former, you can enforce provision, including via JR if necessary. The LA is responsible. Waiting lists are irrelevant. Email the Director of Children’s Services reminding them of their duty. If that doesn’t work, you need a pre-action letter. However, if the provision is vague and woolly, it can’t be enforced and you need to look to improve the wording, via appeal if necessary.

Mentor

Similar to the OT, is the provision detailed, specified and quantified in F? If so, you can enforce it in the same way. Things like meals, cinema, shopping, etc. can all be part of the EOTAS package. The benefit is places are often quieter during school hours. Do you have a mentor/company in mind.

SALT

If it was in F, as it should have been, it was the LA’s responsibility. They should not have removed it just because the NHS couldn’t or wouldn’t provide it. It sounds like you need to appeal and for this to be part of the appeal.

clinical psychologist

You need the provision to be detailed, specified and quantified in F of the EHCP. Then, it has to be provided, can be enforced. The benefit of this is DS wouldn’t need to sit on the normal waiting lists, provision isn’t limited to the support available via the NHS, and provision can be excess of what is typically available via CAMHS e.g. more frequently &/or for a longer duration.

APs

You may have already tried them but focusing on animals since DS enjoys the horse riding he already does, have you looked at:
Shardeloes Farm Equestrian Centre
Fortune College
Stable Futures
The Bucks Goat Centre
Pathway Ponies.

What other types of activities might DS enjoy?

Are you near enough to any of the neighbouring LAs to look there?

Sometimes, though, there just aren’t formal AP providers for some DC. We don’t use use any APs for DS1 because there just isn’t anyone suitable. For DS3, we use one outward bounds provider he goes to 2 days a week, but most of his package doesn’t use AP providers.