My ex is stopping money for his now 'independent' autistic son.

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Bit of a mix here, but I know that if it was posted on AIBU, I would get roasted.

So my ex is now stopping payment for my autistic son because he's 21 and of an age of independence. The reality is he still needs me to cook a hot meal for him, get him to appointments and travel hundreds of miles to see his partner.

He's got a one off child payment which amounts to £2,500 now he's 21 because of a child savings we set up when he was born - obviously it was a post university account but our son didn't go to university. He lives with me, I support him day to day. The household has an income of no more than £10,000 a year, but I do own the house. Ex has a household income that is above £100,000 a year.

I just feel this is unjust and he should pay until our son is fully living an independent life. Am I being unreasonable to request that he keep the not very substantial monthly contribution on? I find it most egregious given the cost of living crisis.

I taught autistic children for many years, and they all had social workers, despite being cared for perfectly well. I'm surprised that you weren't offered one for your son. Our school was proactive in ensuring that our parents got all the help and support available to them.

My mum lives in an extra care block of flats after her stroke. Her disability social worker organised that, and when I pass other residents in the corridor, it's clear that some of them have autism. Downstairs there's a large office that carers and support workers operate from.

I would definitely contact social services. I'm not saying the process will be easy, but with your supportive children's help filling in the forms and pushing the authorities on behalf of you and your son, it's certainly possible to get this kind of help.

I think if you're only happy with a certain standard of care for your son then you need to be the one to choose somewhere for him. So you're going to have to be his advocate in sorting this out. Once you have found somewhere, if it needs any additional costs, THEN you should approach his father. "We have found this nice place for DS. He will have carers going in regularly and it's got X, Y and Z. It will be covered by <x> funding, but he would really need some extra "pocket money" on top if he is to have any treats or fun outings. Seeing as I am on a low income myself, and don't have any spare, would you be able to provide the extra x pounds per month to enable him to go to the cinema/whatever?"

The other thing to think about is you have cared for him for 21 years, and have decided you’ve had enough, but on passing this to your daughter how many decades will she take the same burden?

It’s not the same relationship as a parent to child in any case but an expectation that your dd and her partner should care for so long is not good.

My ASD daughter has told me that I have to live to be 200 & she's never leaving home! ;-) (I'll do my best!) Youngest son is ASD too, daughter's twin is NT.
I'm hoping that when I shuffle off this mortal coil, nothing much will change for them. House is paid for.

OP I really feel you are very burnt out but also have some unusual thoughts about things.
Moving your son to an assisted but more independent life will be a good thing for everyone, him, yourself and your daughters.
It is absoloutely not your daughters responsibility to spend their lives looking after him and things change, circumstances change, you need a more concrete longterm plan for your son.
There is nothing "neglectfful" about making longterm arrangements for your son- he could live to be 80, at some point your daughters will also be unable or unwilling to care for him but either way it's not their burden, hes not their child.
Also please bear in mind that your ex's family income of over 100,000 may not mean they are rich, me and my husband earn around 95,000 and we certainly arent rich and we have no kids.
It really isnt your ex's responsibility to keep paying for your son cause where does it end- will he still be expected to pay when your son is 40?
Having an adult social worker would be the best thing for him and having more independence will be great and confidence building for your son as well.
I also dont think there is anything neglectful or offensive or embarassing about saying "I'm not going to pay for my adult son anymore" and I dont think anyone would judge either yourself or ex husband for that regardless of his "high earnings".
Why are you so against your soon getting help from social services and moving out to an assisted living place?

If I set my level of parental responsibility at the same level as when the state were willing to intervene, I'm not sure I could sleep at night.

Depends on the needs of him and his levels of independence. Would he meet the criteria to undergo Independent Travel Training - to get him to his appointments/ meet his partner?

@MaryTruss

I was under that impression too.

See www.nhsbsa.nhs.uk/check-if-you-have-nhs-exemption/medical-exemption-certificates

There's a condition on this form FP29A about a physical disability and not being able to go out unaccompanied, which applies to my DD.
You cannot complete it online, but this is what it looks like,
www.templateroller.com/template/2117012/form-fp92a-application-for-prescription-charge-exemption-medical-united-kingdom.html

I had to ask the receptionist at my GP surgery for the form. I completed it there and then and my DD was with me as she had to sign it in her own right. If you are your DD's appointee and sign for her, then you need to submit evidence of that.

Then you hand the completed form to the receptionist, they have to give it to the GP to approve, sign and post off. About a week later, you receive the exemption card, like a credit card which you can carry and show wherever it's needed.

My ASD son has a Social Worker OP. It’s nothing to do with him not being well looked after (he is). It’s an Adult Disability Team Social Worker due to his ASD diagnosis. He got one at 17 (child services first then adult).

Your DS is entitled to an assessment of need and depending on this, he should be eligible for supported living accommodation especially as from your OP, he can’t look after himself in terms of household stuff and appointments.

My DS is 20 and was offered a lifelong tenancy in a very nice modern house shared with 2 other young people with similar needs. Carers would have come in daily to help with living skills and a carer sleeps in overnight in case support is needed. They arrange social activities for them. etc. He would have contributed £100 a week from his benefits which are £250 with PIP and LWCRA UC. He may have also got housing benefit but not sure as we are trying to get him into an ASD specialist residential college first (he has a mild LD as well) as I want to give him a chance of gaining independence skills before we got down that route and he spends the rest of his life gaming and living on benefits which is my fear!

He also has an EHCP to 25 but didn’t get it until age 15 so his education has been a bit of a shitshow and he’s very disengaged so cant work which is why I’m trying to get him a last chance of more intensive support in this college so hopefully he can later on. If we lose the SEND tribunal next month (for the residential college), supported living will be the next option as it’s not helping him being at home relying solely on us, especially when we’re older. It’s my duty to put this in place for him.

You need to call your local councils adult social care line and ask for an assessment asap. It took over a year to get one for DS so should have been done when your DS was younger really.

It’s very hard to get them to be independent while living with parents.

Agree with this entirely.

Nobody is saying your life isnt impacted but he is your child not theirs.

I would never give up my life to look after a sibling, sorry but I am my own person and have my own life, I did not choose to be a carer.

Your daughters may not want children now but they may in the future or maybe they would want to move away or go for a high impact career or maybe they get very sick.... the point is he is not their responsibility.

He is your and your ex husbands responsibility only and you both need to sit down and think of a long term plan including what happens when you both die and your daughters were unable to care for him for whatever reason.

I was offered one for my son. I never said I wasn't. Social workers were involved but after 2010 the budget for his education in school could only be extended to twice weekly mental health issues. He had a full ECHP at this time.

And I have to say, I understand your frustration, especially at your age, but there no way I’d palm DS off to his siblings. He’s not their responsibility, he’s mine, and it’s my responsibility to make sure he’s set up for when I’m gone. I’ll expect them to check in on him and have power of attorney to make decisions for him but not to care for him. They’ve got their own lives to lead.

Finding you exhausting OP tbh. You have had lots of good suggestions on here.

can’t put my finger on it, you want an independent life but want your daughters to pick up on your son? If they’ll do it let them then. The father doesn’t have to do anything no point being bitter with him if he’s said no. Or say to him youve decided to refer him to social services and they’ll set up independant care. Don’t take on the load if he won’t? At the moment because you’re doing it all he might think he doesn’t have to and he knows you won’t leave your son destitute.

SEN moved to ECHP when he was in Secondary School. It's still up and running, for education only, until he's 25.

Social care provision and education provision (which MH therapies in the EHCP are) are separate and come from different budgets. In DS’s EHCP is the preparation for adulthood provision? There should be. Is there OT provision too? What placement is he currently attending?

If DS has an EHCP and is still in education depending on specifics it may be possible to get a court order to continue maintenance in some form.

Are your other children from the same father? Are they in touch with him?
I hope that if so, they'd be giving him a flea in his ear

The EHCP should cover more than just education.

Does his EHCP cover independent living skills OP. If it doesn’t it should as this covered under education. What is his provision now?

OK, what is his educational provision? is he at college?
And just a word of caution, you are aware that the ehcp may not remain till he's 25 - it depends on decisions at each annual review.

I think once they are adults it usually stops. Your son will be able to clim benefits as an adult if he can't work. If he can work then he will have his own money surely ?

So your advice is to stay calm and carry on. Oh and when I die, pass on the care to my daughters and their partners, who by the way love their brother and are happy to help. They are are also happy to fund care for me if I ever need it. We are family and we do take care of each other. Not just popping in twice a month to check everything's okay.

They really do expect the wives to take up the slack, plus the ex wives

You sound very willing to let others pick up the slack yourself, to be fair.

The EHCP should cover more than just education only if he has been assessed as meeting the criteria for social care and/ or health e.g. continuing health care
It took me years of fighting to get anything other than education.

It's valid until then. I feel I'm attending a PIP assessment on behalf of my son.

He has applied to loads of places for work. I use all local contacts to help facilitate this. So far no interview.

He has raised over £700 for the charity MIND though. Gosh, perhaps I shouldn't say that, it might impact on our household income.