Aibu to think myself and my child are being discriminated against by after school club?

[JudyLemon]

My child has Asd and has 1:1 assistance in school all day outside of the classroom. He has his 1:1 due to his behavioural issues, he cannot be in the classroom with the other children as he cannot sit or listen during a lesson and will be extremely disruptive. If he doesn't want to do something or if he doesn't like something he will run away and will threaten his own life. However he is not often physical, he will sometimes lash out at other children but never adults.

I am starting a new job soon and will be requiring childcare after school and in the holidays, I have contacted the schools onsite childcare provider and they have said that they cannot have him. They say they have spoken to the teacher and the teacher feels the environment is not suited to my child. This is because it is very busy and loud and because they cannot provide 1:1 support. I have reached out to them again and asked them what alternative options (perhaps shorter sessions or I could provide sensory toys) they will instead give me and they have said that they cannot accommodate my son at all.

Aibu to think this is discrimination? Am I expected to never work a good job again because of my child? Surely they have to put something in place?

Let me know if any of you have been in this same position and how you made it work please.

It's utterly shit. The answer is no you can't have a job that requires you to work after school hours. So you can't have a proper career so you're stuck on benefits and if you're a single mum you can't have anyone live with you cos then you'll lose those benefits.
And they wonder why parents of kids with SEN are so miserable

It's childcare not education so no, they don't. 1:1 would cost you a lot more than whatever the appropriate ratio is for other kids in the year.

I appreciate it isn't ideal. But it's not discrimination on the part of the school. Our OOSC is privately run but in the school.

We’ve never found suitable childcare for my asd child who sounds similar to yours but is now in specialist. Respite in our area specifically won’t cover childcare to allow parents to work and we were turned downed down for any respite as la said he can access activities in the community which translate as he goes to an hour long inclusive football club once a week with a parent in attendance. I do have a partner and only one child and we’ve managed to structure our hours so that one off and starts late and the other started early and finishes early so does pick up.

I’m not miserable. I don’t have much money and I’m often stressed but definitely not miserable.

Do you get DLA for your son?

Breakfast and after-school clubs are utter chaos at the best of times. Kids of all ages under normal classroom staffing ratios. Unfortunately if he can’t cope in a regular classroom environment, they’re correct in that it’s an inappropriate and unsafe choice both for him and the other children. You’ll need to look into another option, I’m sorry.

You're not unreasonable to think there ought to be a better solution and support for you though.

Childcare provision for children with SEN is shockingly bad. The government could and should do something about it.

I hope those talking about sacrifice or living with the consequences of having children fully understand that carers allowance is just £69 a week.
DLA isnt supposed to replace a parents salary. You can claim on behalf of a child if you are in a household with two full time salaries.
It could offset the extra cost of childcare over an above normal childcare, like funding a 1:1 but it might not cover that. and having funds doesnt magically make the childcare exist either.

If he needs 1:1 and they can't provide that then no, they aren't being discriminatory, they are just keeping the children in their care safe. It may not seem fair to you but it also wouldn't be fair to put other peoples DC at risk of being hurt or staff in a situation they aren't able to manage.
You need to look for a nanny or childminder with no other children. Preferably one with SEN experience. The council usual have a list or childcare.co.uk are very useful and I think SEN can't be filtered.

Responses to this make me so sad. Essentially put up and shut up.

It could be discrimination under the equality act - you cannot refuse anyone entry because they are disabled, and where possible reasonable adjustments must be made to accommodate additional needs.

Most people point to the fact they will not have funding for a 1:1, therefore no reasonable adjustment can be made. That is not the end of this - why don't they have funding for this? I would challenge this with the local authority (I know others who have, and have been successful, and I plan to do the same if it becomes an issue when my disabled daughter starts school).

It does not make any kind of economic sense for you to not work 7 + hours a day, generating an income on which you will pay tax, and which will reduce the benefits you claim because you cannot access childcare for 2-3 hours a day.

Some people may question why the local authority should fund this when they don't contribute to neurotypical kids after school club fees. The answer would be because they is about equality for all, and that doesn't mean everyone getting the same. it is about levelling the playing field, not everyone gets exactly the same, because not everyone needs exactly the same. This "additional" funding would just enable that family to access exactly the same services as you already do - they are not getting more.

I would also question how many parents would so willingly and passively accept this situation if their child acquired a disability - as opposed to being born with one. I wonder if they would expect to give up their job, possibly their home, and their entire way of life because their child was no longer neurotypical enough to access after school childcare.

I often feel like when your child is born with a disability we as their parents should not expect equality, we must accept the cards that have been dealt and yes its unfair at times but also we can't expect those not affected to cough up to make society equally accessible for all. But often the same attitude does not prevail when a disability is acquired and it feels like something has been taken away or lost and suddenly it seems more unjust. This is a tangent but It's something I have noticed as a parent of a physically disabled child. If they have never been able to access a football club...that's ok, but if they used to be Part of a football team and then lost a leg, well they are part of the team and let's do all we can help keep them part of the team - amazing attitude, but wouldn't it be great to think like that when the kid born with one leg or in a wheelchair asks to join?

Appreciate this won't be everyone's experience but I do wonder how parents would feel if their child was asked to leave ASC because they acquired a disability.

I think people need to remember disability can happen to anyone at any time and this should be your fight too. I never thought it would be my life - but here I am, and I am shamed of how ignorant I was to the struggles before.

I'll stop my little rant there and brace myself.

Other options could be direct payments, if you have a disability social worker they should be able to carry our an assessment but you are not allowed to use them to over child care so you can work, it's more about respite or so they can access something which would benefit them which otherwise they couldn't, but you could maybe Argue ASC provides the childcare and direct payments is just used to make it accessible.

Alternatively a charity may help - you can apply for grants, although I appreciate relying on grants which may stop at some point isn't ideal for holding down a job.

I would also consider moving him to a specialist setting, one near us does offer after school care but appreciate not all do. It may benefit him anyway if he is spending 100% of the time out of the classroom.

But please do fight your LA for funding - I know one lady who managed to get it written into the EHCP. If you are on instagram her handle is alfieandlesley and she has some really helpful highlights on this.

Best of luck! I really hope you can figure it out.

I can't work because of lack of childcare for my son .
He has severe autism and I can't expect a before or after school club to look after him without a one to one which they understandably don't provide 🤷‍♀️

@Aliceruns great post.

OP I'm another parent to a SEN child that's had to give up my career due to the care my child receives. It's not fair, it's thoroughly shit but people not affected don't give a shit.

If they have said they do not want to do it, why would you want your son where he isn't welcome. It's not fair to him or anyone else. The reasons they have given you are in fact very valid.

I love this comment. So true.

That's not how the Equality Act works.
'Reasonable adjustments' need to be made, but it's not discriminatory for an after school programme to be unable to provide an entire extra person for one child with quite extreme needs, when there is no additional funding for it.

This is what DLA is meant to cover (appreciate that it really isn't enough). Can you use any of this to pay for a 1:1 for the most critical periods? Do you also claim carer's allowance?

I understand you being disappointed and frustrated by the ASC's decision OP, but I am wondering what it is you would like them to do? What was it you were hoping for when you asked them for a place?

You have said yourself that your son needs a 1:1. Even with a 1:1 he can't cope in a classroom environment, which is a relatively calm and structured space, so has to work elsewhere with his TA. Were you hoping the ASC would just disregard this and say he's fine to attend a noisy, busy ASC full of other DC without 1:1 support? I can't imagine you would feel happy to leave him in their care if so as this would suggest an extraordinarily cavalier attitude to the safety of vulnerable children. Wouldn't putting him into that environment also cause your DS a great deal of distress and, from what you've said, likely result in him running away or lashing out at another child?

Or were you hoping they would instruct a member of their staff to 1:1 him and take him outside of the ASC room, basically replicating his current set up in school? This would mean the other DC would not have adequate supervision, again putting everyone involved at risk of harm. In your shoes I would also worry about whether the ASC staff member assigned to him had the necessary experience with SEND to meet your DS's needs on a 1:1.

I'm sorry, OP but I am really struggling to think of any reasonable adjustments the ASC could make in order to accommodate your request without putting anyone at risk of harm.

@Aliceruns - I have a child with a disability. I am very sympathetic to the OP. It's shit, the support the government provides is totally inadequate and, as with most care, the burden falls most heavily on women who are often severely financially impacted.

But that doesn't mean that it's discrimination for an ASC to be unable to meet the OP's son's needs.

I've had to quit my full time job and work around appointments, school refusal and all sorts of other stuff. It goes with the territory.

The after-school service will have a strict policy on the staff to child ratio, if they had to accommodate your child they would have to reduce the number of children in their care, which will have a knock on effect.

YABVU to expect them to offer your son a place, when by your own admission he needs 1:1 and there are some quite serious safeguarding issues.

It's not discrimination. They need to keep your child (and the other children) safe and they don't feel that the environment is appropriate to do that.

Im not saying they shouldn’t but it must be so eye wateringly expensive. A 1:1 TA all year would be 12K+ and then to add in holiday clubs, after schools clubs etc would be absolutely extortionate. I know you would pay for after school and holiday clubs (presumably as you do with NT children) but the costs would far outstrip the payment. I’m not saying it’s right and I don’t know what the solution is but it would be very costly.

See what funding you might be able to get for some 1:1 hours or a placement in a more appropriate scheme.

You also have to consider whether he's coping at school and whether you should ask for a review and discuss different placements. lashing out (and all challenging behaviour) is communication.

When my two have become physical it has always been a stress response, total overstimulation and them being in a situation I should never have put them in.

I'm not going to lie. It's fucking hard and it stays hard. I've been fighting for 20 years and still fighting.

Help is out there but it's fucking hard to get. You have to be the biggest, loudest pain in the arse to be the one to get it.

Talk to his social worker and see what options you may have. Apply for direct payments. My youngest's budget now allows me to get him 2 full days 1:1 with probably one of the best PBS specialists on the country and we are seeing real change for the first time in about ten years!

It's hard and yes, not allowing someone access to a service that others are allowed to access based solely on that person's disability is about as disability discrimination as it gets!

However, given he has to cope with what is clearly massive stress all day, it isn't in his best interests to add extra stressful hours on top of that. It's not fair to him. Really push for support and alternative placements.

Some places are worse than others. We moved halfway across the country to get into a good county for people with disabilities.
Well, I say good. Much less shitty is probably more accurate.

Join FB groups, connect with other parents, find out everything that's out there.

It’s really hard OP. I work schools hours mostly for this reason. If I need to work a long day (e.g for training) then I have to pay extra for a 1:1 at the holiday club. It’s phenomenally expensive and my child is considered relatively low needs compared to many other disabled children. It’s an area where the government needs to help because DLA (if you get it and many families dont) is nowhere near enough to cover the drop in income from working extremely part time or to hire a specialist nanny.

Has a full care assessment been done by Children's social services? If not, ask for it immediately - it's a statutory requirement under section 17 Children Act 1989. It may be that you can make a case for respite care that enables you to work.

It’s Unrealistic in my experience and you need to make arrangements for your child that adequately allow for his needs