To wonder where the inclusion/equality is for people with learning disabilities?

[AmericasfavoritefightingFrenchman]

Or if you prefer, people with academic disabilities.

For full disclosure I have a secondary-aged DC who was initially diagnosed with global developmental delay. This was upgraded to ‘academic/learning disability’ when DC failed to catch up by the age of 5.

Mainstream school isn’t equipped to support inclusion for DC who can’t more or less keep up with the curriculum at the pace of the rest.

Specialist placements mean mixing only with other families of DC with learning disabilities.

Hobbies and clubs are difficult unless specially for DC with learning disabilities so again no mixing outside of that limited circle.

Support groups are usually targeted at Downs Syndrome or ASD etc so no welcome there.

Those with physical disabilities eg wheelchair users, those with CP, those who are Deaf regularly make a point like this: ‘I’m in a wheelchair/Deaf/etc, I don’t have a learning disability, so don’t talk to me as if I were stupid.’ All very well but where is the solidarity for DC like mine? Is it ok to talk to them as if they’re stupid because they do have a learning disability?

Even those with ASD, who make up a sizeable proportion of my DC’s peers at the specialist placement, are keen to point out that it’s any learning disability, not ASD, that is really disabling, again taking care to distance themselves from any solidarity with those like my DC.

AIBU to wonder what is left for us?

Yes but

The only reason the local authority can refuse the request is if:

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.

and a at capacity class of 30x 4 and 5 year olds in their first ever year of school - the above would apply in the overwhelming majority of cases as a legal reason to refuse a request

My son (teenager) has a severe learning disability. Inclusion doesn't exist for people like him. He doesn't have equal access to health are etc. I would settle for separate equal provision for activities etc but that is not there either. Eg school holiday special needs activities don't take children as severe as him.

@HedgeRin , I have a daughter with autism and a learning delay , I’m so scared for her future, as I can see her needs being ignored. She may have an iq in the seventies, which means she will get no help . I’m really sorry about what happened to your sister .

"and a at capacity class of 30x 4 and 5 year olds in their first ever year of school - the above would apply in the overwhelming majority of cases as a legal reason to refuse a request"

In the majority of cases in a mainstream school it wouldn't. It is very difficult to make a legal case for incompatible with efficient education. Making things ' a bit more difficult' isn't enough.

Very difficult for either of us to prove either way.

the teacher sounded ghastly anyway

did you read what the HT of the first school wrote. A state school. In writing. I’m either 🤔 OR he’s utterly utterly stupid

Sorry I’m still trying to grasp what outcome you would like.

Do you want your son to be included by NT/ non disabled people in social groups?

Me too. And others. Not clear on what the op wants

I don’t think the op confirms her child has an ehcp . Sorry if I missed

@Vegrocks i have to say here that your badgering of the OP is really crossing a line. You are firing posts at her and endlessly saying you don’t understand this and you don’t understand that. I don’t (to my knowledge - my son is only little) have first hand experience of this, but she has been perfectly clear and I understand. It is a grey space of no ‘clear’ diagnosis. If you don’t understand it, why not leave the thread to those who do?

I work in a NHS community learning disability team although it is for adults with health or distressed behaviour issues. We do have links to social care who should be able to help. Do you have any contact with health or social care to see if they can advise / provide support?

Ok I’ll bow out

This is awful. And must be exhausting for you to face on repeat. Society needs to be more inclusive of everyone’s needs.

I also think changing terminology hasn’t helped. In the old days everyone understood what ‘mental handicap’ was. I’m not saying it was a good term but I think learning difficulties / learning disability is confusing for people.

This is about people’s values though and having an inclusive society has a long way to go

I get you OP, and it's ok to just have a moan without necessarily expecting solutions.
The trouble is that we aren't allowed to talk about autism anymore without thinking of gifted millionaires, we're not allowed to think of ADHD as hyperactive boys anymore. And LD just doesn't fit into the new 'inclusivity' which is actually possibly more exclusive than before. We did a sort of session for adults with autism, most who have LD as well and it was a real struggle to find famous people with LD or even recognisable people with LD. There just isn't that Temple Grandin/ Richard Branson type figure.
I see it with my DD who is emotionally a few years behind her peers as well as academically. She is like a reception kid, but in year three. We're getting the sympathy invites and the sort of mumblings about things which may have happened over the weekend. She doesn't see it but I do.
I also don't want her to just have friends who have additional needs. In the same way that I don't want my NT boy to just invite the NT kids to his party's. Then again, how many adults can honestly say that they have friends with LD or autism?
I worry for my daughters future, she is so trusting and over shares. I think she will feel the need to socialise and won't necessarily be able to assess intentions or boundaries.

Ive been reading this thread and held off from posting. However I thought I'd jot down what (from a similar position) I have thought and noticed. Its not intended in anyway to tell you what to do, just a reflection of our experiences.

Class parties stop after Yr 3. Then its all about working out the 5-10 children who are closest and hopefully kindest to your child. You focus your attentions on them (lots of playdates even if not reciprocated) and any activity they can do together (cooking, crafting, minecraft, cinema, bowling).

From Yr 5 onwards children become a bit more aware of the wider world - secondary school looming - and simultaneously become a little more conservative around diferent/alternative behaviours. The academic and behavioural gap between child and peers can lengthen - and the peers start noticing and in some instances commenting and being unkind. At this point many LD children opt to spend time with younger children who are less conservative in outlook - but it just doesnt work for long, they change too.

This continues in to the early years of secondary when fitting in and not being different seems key. This is also the point that the rest of the world is very intrusive and frankly worrying (use of SM etc).

At Yr 7 we moved in to a specialist provision (not suggesting you do the same). DD is academically able but needs a slow pace - just visting M/S schools overwhelmed her. I cant tell you how hard that was to accept. We had to face down that her life was going to be different and harder. We know disabled people of all ages are shunted to the sidelines - but going somewhere disabilities are normalised has been wonderful and she has gained confidence. I wish we had done it earlier. (I'll rant about underfunding elsewhere).

What also has been key was accepting that we werent able to match DD with children with the same diagnosis but that worthwhile friendships could be formed with a whole range of individuals of varying disabilities. Plus those parents understood how different life is for our children and we could work together. Facebook was very helpful as our Local offer webpage (County council).

Clubs designed for N/T people havent worked out that well - children move up groups as they progress and DD was left behind and most importantly noticed that she had been left behind.

So now we turn up to D/S groups, ASD groups, Riding for the disabled (excellent), disability swimming sessions, SN guide troops etc. Some have worked, some didn't - but the difference is that they understand about adapting things and want it to work. Worth pursuing on a suck it and see approach.

DD's childhood experiences will never be identical to my older children. But thats ok - we are doing our best to build her the best life we can.

Inclusion IS limited - sometimes by attitudes, sometimes by practicalities. I understand the frustration. But I can't change the world, I can only bend our immediate enviroment so thats what we do.

I hope you complained about those schools although I'd understand if you didnt have the energy. What they said was disgraceful.

I just wanted to say that I do understand about the schools as we have had similar experiences with head teachers saying the most outlandish things to avoid us applying for a place. It is ASD in our case though.

I also find the special school miles from home difficult as it means you have no local friends. People travelled a 30 miles radius to his last school and relied on taxis. You dont ever get to do that thing where you wander down the local park and some class mates happen to be there.

Would I be correct in thinking that previously in days gone by, this disability would have been described as "having the mental age of a x year old"?
I used to go to a parents group with a lady who had a child of school age, and she always used to explain that the child had the mental age of an 18month old. It may not be correct now but it was a simple way of expressing quickly to someone else what they could expect from the child and how to interact with them.

No it wouldn’t. DC with EHCPs, which if you read the OP’s posts you would know her DC has, placed after the national offer day are classed as excepted pupils for ICS purposes, and the bar to prove incompatibility is higher than many realise. Case law shows it is more than an “adverse effect”, “impact on” or “prejudicial to”.

@Vegrocks what is your problem? Why don’t you go off and pick at and bully someone else?

I am so sorry about the lack of provision for your son. The health care issue is frightening. I don’t think DC could ever safely be in hospital without me or DP and even then it’s hit and miss whether the HCPs understand us.

Thank you so much @Owlatnighttime. I’m usually pretty lucid, I think, but I’m glad you understand.

I knew specific examples would be disbelieved or reasoned away- they always always are.

As to what I want, yes I want my DC - and others with learning disabilities of whatever severity- to be able to participate fully in society. So yes to being included in activities that involve others with or without disability, with or without ASD. Yes to frequent opportunities for social contact outside of school. Not only ever, maybe, rarely, with the ‘correct’ category of other learning disabled folks. But definitely sometimes with some peers and friends from school. Rather like anyone else.

Thanks @Starryskiesinthesky. That’s interesting about the parameters of your team. Are there other teams who work with adults who don’t have health issues?

Currently my DC is very healthy, and as such discharged by the community paediatric team to ‘toddle along fine with an IQ below 70’. (Direct quote from paediatrician who discharged us- she wasn’t quite stupid enough to write it down but told us in front of DC, for those who need to hear more examples.)

About distressed behaviour, DC ‘self-soothes’ (or self-harms?) by scratching and maintaining bleeding sores especially on the face and neck. We’ve been dismissed by CAMHS once as not meeting thresholds. It seems to be not distressed enough?

So we feel very unsupported in that sense.

Just to back up the OP, both for my sister and middle child her experiences some entirely relatable.

For me with my child it was amazing how many private nurseries just didn’t reply. As they were only 18 months younger than their sibling it was starkly obvious. One told her, then went back on their place during the settling in process as they were a risk with other over ones being non-mobile/ non-sitting apparently. They needed 1:1. Another manager was actually decent enough to quietly tell me head office would block the space and go over her anyway, so as not to waste my time

Support and therapies can be included in EHCPs even when DC don’t meet the normal threshold. If they are in F they must be provided even if the LA have to commission independent provision. If they are not in DC’s EHCP already you need an early review to try to get them included.

Ha ha! @JustKeepBuilding there are some health provisions in the EHCP. They don’t seem to be worth the paper they’re written on. Our favourite paediatrician was incensed at the idea that ‘education’ could think of telling her lauded self what to do with a patient.

@Starryskiesinthesky I replied too quickly. Thank you again for your understanding. I agree that terminology is unhelpful.