To think there are not enough resources for all disabled children?

[Packofsense]

AIBU to believe that the vast majority of resources for disabled children, from diagnosis to DLA to clubs for SEND children, to holiday clubs for SEND and special school places, as well as online support groups or RL support groups for parents are for autism or ADHD?

I accept that more people are being diagnosed now which is welcome news, but I'm just wondering why other disabilities aren't seeing similar levels of increased diagnosis and support?
My LO has limited mobility due to CP and I have sought support via groups in RL as well as online, yet I find that there are no groups specifically for CP in RL, and very few online. I don't know any other parents whose children have CP or similar disabilities.
In my quest for support, I have joined a number of online groups for disabled children and their parents and predominantly, the groups are full of children on the pathway to ASC or ADHD and therefore quite often, I don't feel we have the same struggles.
For example, my LO has never attended a mainstream school, will always need mobility aids and physically will always need support, which may mean supported living when DH and myself can no longer offer the support needed.
In contrast, other parents in these groups have the challenge of their DC having no awareness of danger and running into roads etc, yet there is hope, I presume, that their DC will learn ways to manage these impulses? Otherwise we may have adults in a few years who will be running into roads? This difference matters because there is little common ground.
This is just one example.
With the increasing levels of diagnosis, why doesnt this include more diagnoses of children with disabilities that aren't ASC or ADHD?
Why are all the support groups predominantly made up of parents with DC with ASC/ADHD?
I understand more children are being diagnosed, but why only ASC/ADHD?
Why aren't there much more resources available to reflect the increase in children being diagnosed with ASC/ADHD?
Why are the resources available being spread so thinly to the point where there aren't enough to go around?
My LO used to attend a club for disabled children, and this gave me a couple of hours of respite, but we can't use the club anymore because my LO was scared of the other children after being pushed over and bitten/struck a number of times.
I completely understand all disabled children need support but why aren't we increasing provision to cater for all disabled children?
I can't take my LO to disability friendly sessions anywhere, even when they are for limited mobility because she is afraid of being pushed over/bitten or struck and everywhere I have tried is predominantly full of children with ASC/ADHD with mobility problems which usually means a lack of danger awareness rather than a physical inability to move.
Maybe I'm just having a bad day after my LO was sent home from school today after having hair ripped out by a child having a meltdown.
I have spoken to staff over and over. Today they simply repeated that the other child has ASC and unfortunately is too quick and nimble to always prevent from getting to my child.
I feel like my LO is suffering because there aren't enough school places or resources available to cater for all of the children who need support.
In order to keep my child safe, I must withdraw from the SEND community I should seek support from and that is supposed to cater for and understand disabled DC, yet appears to cater mainly for ASC and ADHD.
Feeling quite defeated and sad this evening.

You've asked so many different questions.

Your title is 100% spot on, but there a a lot of things in your opening post that can be answered fairly easily.

My LO has limited mobility due to CP and I have sought support via groups in RL as well as online, yet I find that there are no groups specifically for CP in RL, and very few online. I don't know any other parents whose children have CP or similar disabilities.
Have you been in touch with SCOPE ? Cerebra ?

other parents in these groups have the challenge of their DC having no awareness of danger and running into roads etc, yet there is hope, I presume, that their DC will learn ways to manage these impulses?

Why do you think that? I remember doing my Masters in Autism Education over 25 years ago, and there was controversy because it had been decreed it wasn't humane to keep young people safe from running by locking doors, so those people were then been given drugs in residential accommodation as the only way of then stopping them running, yes.

Otherwise we may have adults in a few years who will be running into roads?

Yes. That is what happens.

With the increasing levels of diagnosis, why doesnt this include more diagnoses of children with disabilities that aren't ASC or ADHD?

I don't know if I am misunderstanding what you are asking, but obviously Paediatricians can only give a child a diagnosis of the condition they have. They can't "diagnose more children with disabilities that aren't ASC or ADHD", if children aren't presenting with different needs, I mean, that seems so obvious, I can't help wondering if I am mis-reading something.

I completely understand all disabled children need support but why aren't we increasing provision to cater for all disabled children?

This is what everyone who has a child with a disability, and many people who don't would like to know.
Perhaps everyone could ask their sitting MPs, and then their prospective candidates in the General election later this year, and then vote accordingly ?

I must withdraw from the SEND community I should seek support from and that is supposed to cater for and understand disabled DC, yet appears to cater mainly for ASC and ADHD.

I am really sorry that you are in this position. As are so many parents of dc with special needs.
However
95% of the database of pre-school children with additional needs over the last 10 years (at least), the prime area of concern is Social, Communication and Interaction. ie, the children that will (when they eventually reach to top of the waiting list) get diagnoses of Autism.
So, on a purely "fair" proportion, it would seem reasonable that the tiny scraps of support available to families of children with special needs get distributed so 95% of any support goes to the community with 95% of the children.

Not that it should be a competition for these scraps of support in the first place (see previous note about general election).

Sorry you are having a tough day

OP - where are you based?

My daughter has CP (wheelchair user) and we're in a variety of groups in and around Manchester.

Ime many of the support groups are started by the parents themselves
My son has severe autism and learning disabilities and yea there are various groups and support groups for children with autism etc in m LEA but they have all originally by fellow parents .

Hitting out at parents and families dealing with other life-altering and under-resourced problems they will struggle for life with won't help you get more resources.

Structurally society needs to change to support all disabled people.

Right now you're complaining that the fire brigade put out the other fire first, and when your house is on fire that's understandable, but there's one fire engine and two fires, so they have to start somewhere.

FWIW the support for ASD/ADHD is shit in most areas, sounds like yours is the major exception?

The rate of diagnosis of physical disabilities is largely unchanged because they were bloody obvious in most babies from day one. The rate of diagnosis of developmental disorders and learning disabilities is increasing because children like me were written off as useless timewasters, day dreamers, "no social skills" or similar (or much worse) for most of human history and it's only very recently that we're recognising it's a Proper Thing and no longer labelling them as having "behavioural problems" rather than unmet needs (and most mainstream provision and healthcare still does label and judge, just like you are, TBH).

If you've got a more unusual disability on your hands (no idea what CP is sorry) then of course there will be fewer parents in your area with the same or similar issues.

Lesson one of having a specific problem is, if you want a group then start one, no one else will do it for you! Most of the groups you see were set up by parents of children with those specific needs.

I'm assuming CP is Cerebral Palsy ?

It's unfair to feel as you do. It's also unfair to wish for disabled spaces to exclude those disabled children who are also neurodivergent.

I'm a disabled adult, in a wheelchair, and I'm neurodivergent too. I've been through college and uni multiple times over, am intelligent, so well read, and wish I regularly met up with other disabled people like me. But when I reach out to groups, I'm an anomaly, it seems like others with my level of intellect and conversation aren't joining these groups.

However, those who do have every right to be there. At what point would be draw the line. Mary wants to spend time with others with limb difference like her, but not if they're in a wheelchair. Henry wants to meet other autistic people but not if they also have adhd because its annoying. You get the drift.

As already mentioned, many groups are begun by the parents themselves. A friend of mine has a child with downs syndrome and attends things she's helped set up.

I do wish we didn't need to rely on ourselves that way, it's a lot of energy and time to set up and continue running something, and if we are the one needing the most advice and support then we don't know what we are even doing.

There should be more support from councils, there should be funding for more proper TAs. But it is what it iis.This is why it's so important to make your vote count.

Of course you’re not being unreasonable!Sadly it’s the same for disabled adults.

💐 for you (from a disabled adult with two disabled kids)

Waves at @glittercunt 🙂love the username, it would suit me too… not saying why but I do love glitter! I’m autistic and a wheelchair user so I thought I’d say… twinsies 🤣

My DS is a young adult. Things used to be so much better before this government got in.
I wouldn't withdraw from the SEN community. My son has a great life now and a big part of that is due to the volunteers who run clubs and discos for people with SEN. They are angels. Lots of them are parents or relatives of SEN. You just have to find them 💐

'However, those who do have every right to be there. At what point would be draw the line. Mary wants to spend time with others with limb difference like her, but not if they're in a wheelchair. Henry wants to meet other autistic people but not if they also have adhd because its annoying. You get the drift.'^

This absolutely, there are lots of subgroups in every group of people^

There’s not an awful lot available for any of them to be honest.

I have what will be a very unpopular view. I believe the majority of ADHD and ASD should not be classed as disabled. Special needs, yes, absolutely. Requiring additional supports and accomodations, yes, absolutely. Disabled, not the majority.

As an example, my own (adult) child has ADHD, ASD, OCD, GAD, depression and we all suspect bipolar but that’s mainly controlled via medication that was initially for the ASD but is also suitable for bipolar. Do they have additional needs due to all of this -yes. Do they require appropriate support and accomodations - yes. With this, combined with meds, can they mainly function adequately, yes. They are neurodiverse, with some mental illness likely thrown in but neither myself, nor themselves would ever consider them to be disabled. It’s more like being a diabetic, yes, you have a medical issue, you have medicine to control it, you can function mainly normally on medicine and by tailoring your life to your condition and with appropriate supports, but sometimes you will have an event when you are not controlled but that doesn’t make you disabled.

Whereas my friends (adult) child has ASD, is completely non verbal, unable to be toilet trained and must live in a facility where they are chemically restrained 24/7 otherwise they will cause significant harm to themselves and others. No matter what supports or accommodations are provided, they will never be able to function adequately. There is no question that they are disabled.

I would say both were disabled but some have disabilities that an be alleviated so they can function well and some don’t.

I’d love to know where all these groups are for autistic children.
I had to give up work as no childminder will take my two children (one in specialist school, one in mainstream) and that’s always been the case since they were small (ds is nonverbal with v v basic understanding level, dd has limited speech/no conversational skills but slightly more understanding, ds needs 2:1 care dd needs 1:1)

no provision available for breakfast club or after school clubs, no summer clubs or childcare, theres a 40 minute ‘sensory session’ at the swimming pool once a month, and the soft play centre has an autism friendly session 4 times a year.

services are shit for all disabled children it’s not a race to the bottom

There's not enough support to go round so rather than blame the government who ultimately dictate how much funding goes in to services let's cut off certain groups as they must need it less than our family.

We have several in my town and I'm not knocking them because lots of people use them and get support from them but they are not a one size fits all.
My son is severely autistic ,he's 13 ,non verbal ,he has very complex needs and has little in common wit the majority if children that attend

Is this another thinly veiled anti autism thread? I have 3 children with autism and have had nothing. There are zero support groups, nothing so where are all these groups kids with autism are allegedly hoovering up?

I think its very hit and miss as I said there are several my my town
And although they try very hard to be inclusive its not a one size fits all.as the spectrum us so huge .

So you have several support groups for autism in your town when it’s widely known that and there is zero support after an autism diagnosis for children. Your’re lucky if you get a course on Teams let alone all the stuff listed on here. 🤔

It doesn’t even feel thinly veiled, tbh.

OP: I think you a misdirecting your frustrations here. The lack of resources for your disabled child are not because of children with autism and ADHD. There is a lack of resources for disabled children generally. And the resources you have accessed have clearly been inadequate in keeping all the children safe, including your daughter. This is a symptom of the lack of investment in disability support.

As others have said, the increase in diagnosis of neurodiversity conditions is in relation to historic underdiagnosis. Why would we expect to see increases in all disabilities?

Huh? If you have special or additional needs then surely you are disabled?

Totally agree, my dd has ASD but I wouldn't consider her disabled, additional needs 100%.

I think blaming the 'government' is an easy option when it's clear that we as a society are unwilling to fund and resource the kind of support that many disabled people need and expect. I know this sounds incredibly harsh and unkind but there simply isn't the will amongst the general population to pay enough tax to fund the cost of some of the provision that is needed. We are all quick to complain about the lack of resource and virtue signal but appetite to pay more into a stretched and overburdened system just isn't there, especially when other public bodies are on their knees as well and crying out for more funding.

I don't know what the answer is but I don't think it does anyone any good pretending that it is just the nasty government standing in the way of disabled people getting the support they need. We need to think long and hard as a country about how we support the vulnerable in our society and how this can be realistically funded and delivered in a fair and consistent way.

As a mum of a dd with ASD I wish there were more school options. She is currently in mainstream and finds it overwhelming. The other option would be a special school with a variety of different and complex disabilities and spaces are limited. There is no middle ground.

disabled isn’t some dirty word for inferior people. The euphemism additional needs is generally a way of downplaying the reality of disability.

This horribly othering attitude to disability - well those people are disabled, my child is not - is not helpful. Some disabled people have higher needs than others. But having a disability is to have additional needs in various circumstances.