Work to fit around caring for disabled (adult) dc?

[Moonlightfrog]

Please, no judgemental comments, I hate the stigma around being on benefits and I seriously don’t want to be claiming them but my situation makes it very difficult. I am currently carer for dd2 (she’s 20 with severe autism and learning difficulties), I also have her sister living at home who is also autistic but not as severely. I haven’t worked for a while because I can’t hold down a job when I have to care for dd2, attend hospital/college placement appointments and meetings. During the school holidays I have no respite due to shortage of carers and holiday placements as well as no funding. Dd2 is now claiming UC in her own name and a big chunk of that will be taken for her to attend day services come June when she leaves education. I am struggling to survive in just my carers allowance (UC covers my rent and not much else), fighting to get dd2 into day service for 5 days but it’s likely it will only be 2 days. I am in my own, no partner and DC’s father no help.

I desperately need some kind of work even if it’s just one day a week but I have been out of work for some time and obviously I need work to be flexible around dd. Dd needs constant supervision when she’s at home but I could possibly work from home whilst she’s here. I don’t have any computing qualifications and I am awful on the phone (but maybe I can overcome this). I have ADHD and Autism myself but I don’t see this as a huge issue other than my huge lack of confidence when applying for work.

Is there anything I can do from home that would earn me £100-£200 per week and still able me to care for dd2? I have a laptop? I pick up things easily but am mildly dyslexic 😬.

Is there any help out there with looking for work after being out of work for a while?

There's something called Connect to Work which is a Govt initiative to help certain groups of people into or keep employment. You would fit into the eligibility criteria on an ND and carer basis. If you are in England or Wales, it should be running in your area. Whether it is effective or not though, I have no idea.

Thank you. I have filled in the form and hopefully they will contact me.

i think you’re looking for a unicorn OP. I would def lean on all the government support you can. A longer term plan might make more sense, although when you say it covers your rent and not much else- why don’t you get the housing benefit element of UC to pay that?

I get the housing benefit…..that’s what covers my rent. I get the single persons component and the carers element but because I claim carers allowance that’s taken off my UC £ for £. So I get around £150 a month UC after my rents paid and then I get carers allowance which is £83 a week. It’s pretty much gone in food, gas, electric, WiFi and my mobile phone. Dd2 is getting UC and PIP but from June a large part of that goes towards adult social care and what’s left doesn’t cover all the extras she needs (I am trying to prove this to adult services to get the payments for care down). I hate being reliant on UC but I need to put DD’s needs first and I am not ready to put her into supported living. The longer I stay out of work the harder it will be to find employment. I am only 44 and I have a long time until retirement, I want to better my situation but I know it’s almost impossible.

the problem isn’t you and your skills, it’s the fact that you can’t really work. You need to be in the house on constant alert for anything that might go wrong with your DC. It’s not like you can go and do an evening shift in a pub or supermarket, both of which you could probably fairly easily qualify for.

what you want is an unmonitored wfh laptop based job with no relevant skills or experience. I’m not sure how realistic that is.

what about funding for education? Is there a better chance that you’ll able to work in 3/4 years? You could do a degree. My friend who is a carer has hers funded for exactly this reason

I have looked into education but I have no A levels and my GCSE’s are not great due to undiagnosed ADHD and dyslexia as a child.

At the moment dd is in a placement but she leaves in June and at the moment I don’t know how many days she will get at day service (I am fighting for 5 days but doubt she will get that). There is a possibility her sister can watch her for a few hours in the evenings but it feels unfair expecting her to do that. If I can secure dd2 a 5 day placement I would possibly be able to work school hours but I would need a understanding employer as there will be days when dd has appointments or refuses to go to her placement.

My last job was care work (support work) and was just a day shift and an evening shift but dd1 struggled watching dd2 on my evening shifts, she is older now and dd2 is a little bit easier to care for but I feel guilty expecting dd1 to watch her.

Can she move out into suported living or are you not ready for this yet? Does she have a social worker?

We do have a social worker. I am trying to keep her at home a bit longer but have told the social worker hat I can only keep her here if she’s in a 5 day placement. There are not many supported living set ups near by and we want to keep her close to home, there is one place but it can take years for a place to become available.

In that case youneed to play hard ball with the social worker. Do you have a good one or a kind but not very good one?

Start pushing for extra hours and explain that you can no longer cope. Take everything they offer. Ask for extra direct payments, find some really good carers. We found some brilliant ones by pinching a friends carer. It is really useful to join parent suport groups because you can sometimes find good carers there. We have also had good carers through local facebook though so that can sometimes work.

Ask who will look after her the days when she is not at day care? Explain that you are no longer able to do it. And dont take no for an answer.

As you have so much experience of caring, have you considered working as a carer? I appreciate you may not want to do even more caring! You could get your qualifications and go self-employed. You could choose clients and hours that suit. I had a self-employed carer who looked after my relative one day a week to give me some respite. That carer also cared for someone at home so clients' needs were scheduled around existing responsibilities.

We have a kind but not great social worker 😬. When we had our last meeting I could see the look on her face when I said I would be pushing for a 5 day placement. I know people in a similar position to us that have been refused a 5 day placement and given 2 days, the only difference being ‘I am a lone parent’. I will keep fighting, I have had to fight for everything up until now so I am no afraid of a fight……but I am exhausted.

Cold you take in ironing or any art/craft type work you can do at home.
From sounds of things you hand are really full , hopefully some of the suggestions for getting extra money will help. Perhaps there are charities which will pay some of your bills. Hardship funds

Op, why don’t you want to find a supported loving arrangement for her?

you are only 44, you still have time to build a career and a future for yourself.

Your Dd is now 20, she’s an adult. The longer you wait the more difficult it will be. I have a 21 year old son with learning disabilities, he’s been in supported living for a few months now, it’s an excellent setting, we see him every weekend, we chat everyday over the phone. He’s happy and we’re much happier after years of hard hard work. Think about it.

It really isn’t something I want to do. I have done it before but even though I care for dd, caring for other people doesn’t really come naturally to me and because of my ADHD I can be quite forgetful so I wouldn’t want the responsibility of giving meds. I am happy to do most other things including cleaning or gardening. I do a bit of dog walking and have considered starting my own business. I asked the social worker if there was any help for me setting up my own business around dd, she said she would look for me but I have heard nothing back.

My daughter can’t phone me or even text me, and that’s the main worry for me if she goes into supported living. She won’t use a phone, I have tried to get her used to texting but she refuses to use a mobile phone. Her needs are pretty complex and there isn’t anywhere near by that meets her needs other than one place which is almost impossible to get into. Dd likes to keep busy and has even done some work experience with support. She’s pretty easy going, doesn’t have any violent outbursts, is now sleeping better but she does need 24 hour supervision and it’s this that makes it hard for me to work.

But what is the long term plan? You won’t be around forever, what will happen then?

If there is only one place you know of that would be suitable then start working towards getting her in there. The longer you leave it the worse it will be for her.

OP - would DD agree to Teams meetings, where you can see each other on a device?

We have a DD with learning disabilities (but not severe) in a care home. She can use a mobile, but not texts. We started using Skype, now Teams with her during COVID, to make up for the restricted visiting. She lives 3.5 hours away from us, as she needs to be in a specialist centre - so we can’t just pop in every day/weekend.

Use what you just said. Tell the social worker that you are exhausted and are heading towards a breakdown. They like the words crisis or family breakdown because they know what that means.

Like others have said, she will need supported living at some point but maybe not yet.

Also, you can work out what her share of the bills are and take that from her uc to cover them before rhe oauments for carers. Additional care fees once her living expenses are taken out will be covered by the council.

Might also be worth asking about nhs shared care if her care needs are high. The social worker can help with that.

Ime, it’s better to obtain the NHS CHC funding form from the ICB and drive the process yourself. The social worker should be involved in the MDT anyway.

No social worker ever told me about NHS CHC funding. Another person on a condition specific forum told me to apply for it for DD1. I happened to do a subject access request to Social Services at the time, on an unrelated matter. I found that social workers had filled in the NHS CHC funding form for DD1 four times, without telling me. There was no indication in the papers, that the forms had gone anywhere; nor were there any responses from the ICB. Even after this, I asked DD1’s social worker about it and they told me, she was unlikely to get it.

Actually, it took the ICB about 2 months to do the Checklist, the Decision Support Tool and hold a MDT - and it was approved straightaway. DD1 has been getting it for about 9 years now.

Thank you. I have done the finance forms, told them how much all our bills are and split them between the 3 of us. Because I get UC she doesn’t have to pay towards rent, they have a set amount that the average person can live off and I have to prove any extras she has. They have said she needs 43p a month extra electric 🤨 for extra laundry and they won’t put extra down for clothing unless I provide 3 months of receipts (same for travel costs,days out), I am hoping I can provide all these in 3 months time and get her contribution costs down. Currently she has a mobility car but now with the changes to mobility coming in and the limited miles we will likely have to get rid of the car. Luckily they don’t take the mobility part of PIP into consideration towards care costs.

I hadn’t heard of the NHS CHC funding, the social worker hasn’t mentioned it. I will have a look into it and see if dd fits the criteria.

@Moonlightfrog Look at this OP- very helpful poster- thank you for posting this (for the OP) hopefully it could help her.
It's hard when you want to work but you can't. I'm "lucky" because dh earns enough for me not to work. But DS1 is now 16 so I'm starting to yearn for financial independence and a context that you get from work. So I understand the OP even though I'm in a better financial situation thanks to dh.

Can you apply for PIL for yourself OP?

Thanks for sharing about the 3 months of reciepts. My son is only 17 so i am trying to work out all the stuff we need to before he hits 18.

Keep receipts for everything. If he’s staying in education he won’t need to contribute. If he comes out of education and claim UC on top of PIP they will take all this money into consideration (minus the mobility component).
I wish I had kept everything and I wish I had got help filling in the financial assessment forms,