To wonder what the hell I'm supposed to do?! Re:Disabled partner

[WorriedDad75]

I need some advice.

I live with my DW and our DD, who is two.

I work 30 hours a week as a support worker for people with learning disabilities.

My partner is waiting for an nhs diagnosis (re: autism and dyspraxia) she has been waiting for nearly two years now. She is high functioning but in receipt of the enhanced daily living component of PIP, as she needs a lot of help and prompting with daily tasks etc. and cannot be left on her own for very long at all, she falls over a lot, leaves the gas on and forgets to change sanitary items etc.

I've been a lurker on some of the boards for a while as DD is currently also going through an assessment for autism.

Previously her mum and dad cared for DW and DD when I was at work. However due to financial reasons her mum has had to go back in to full time work and this is unlikely to change for quite some time. This has left us with a problem as DW's dad is 73, not in the best of health, and understandably falls asleep quite often through the day.

Yesterday DW scalded her lower stomach and legs quite badly when she dropped the kettle while trying to make a cup of tea because her father was asleep. She did not wake him up or say anything and she cannot use phones unless to talk to me or her mum which meant she didn't get any help until I finished work three hours later.

DW is currently 15 weeks pregnant. Not planned (failed contraception) but still we are happy and excited.

However I am very worried about what we can do. I tried to ask a family member to help us out but as DW doesn't know her very well she didn't tolerate her in the house for very long, she certainly wouldn't let anyone else help her with personal care.

We have no savings at all and so I can't afford to give up work.

I am just very worried about what we are going to do and wondered if there were any options I haven't been able to think of?

[Notimefortossers]

If I were you I'd give up work and apply for every benefit available to me. That's what they're there for, for situations like this. As your wife's pregnancy progresses she will only need more support and it doesn't sound as though you really have another option. I can't believe she remains undiagnosed when she needs this level of support

[SisterMoonshine]

Direct Payments?

[TillITookAnArrowToTheKnee]

NoTime Took the words out of my mouth.

Can you stop working and apply for Carers Allowance?

[Notimefortossers]

I think you will probably find that what you are entitled to in benefits will match or possibly even exceed what you bring home from 30 hours as a support worker (I was one!). And if you need help to get through the period of time it takes between you giving up work and your benefits coming through you can apply for a Crisis Loan

[Devilishpyjamas]

Carer's allowance is bigger all - it doesn't replace wages.

You need to get in contact with SS & ask for a carer's assessment. They are meant to support carers working & should support your dw & dd. Direct payments may be your best bet - but you need the SS assessment first.

[showhorse]

I have autism and some MH conditions as well and I get enhanced rate daily living/standard rate mobility. I need a lot of support due to my disabilities (and we also have a disabled DS as well) and so my DH has had to give up work and claim carers allowance for caring for me full-time. We also get income support as a top up, plus housing benefit and council tax support (covers almost all our council tax). We can't afford to save much money but my DS gets DLA so we get a lot of tax credits for him, and we manage on the amount we get. We make the most of discounts for disabled people and we can also claim some grants which pays for holidays etc.

If I were you I'd go to CAB and get a benefits check, or try using the tool at Entitled To.

[WorriedDad75]

Notimefortossers I wish she had been diagnosed sooner, would have made a huge difference I think. Her parents and I had a discussion about it two years ago.

Her parents have told me they didn't want her labelled as a child so they never took her to see anyone. She is quite bright and apart from a few social tells if you know her well you probably wouldn't notice, but she is completely incapable of caring for herself.

Her parents practically bankrupted themselves getting her in to a tiny private school with only ten people in the year. She just couldn't cope in mainstream at all.

By the time she was an adult their gp told them there was no point getting a diagnosis if they could look after her! (I was a bit about this.)

It was actually only when she wanted to try to go to college two years ago that we received advice telling us to start the diagnosis now, so she could get help if she ever felt capable of trying university. The college were fantastic.

RE: The idea of giving up work is a terrifying prospect with a second child arriving to be honest, jobs aren't easy to come by locally if it turns out we can't claim anything.

I thought you couldn't receive benefits if you leave work voluntarily?

I can't see what else we can do, it's not safe for any of them, but we are on the breadline as it is.

[Dawndonnaagain]

Leaving work to look after someone on a full time basis is not leaving work voluntarily. Your dw has clearly demonstrated the need for support and you will be able to evidence this. If you have concerns, talk to citizens advice first.

[Devilishpyjamas]

Contact SS for an assessment of her & your needs. If she cannot be left alone they should help

[WorriedDad75]

Thank you Showhorse, yes I will make an appointment at CAB.

DD is at nursery for three hours a day Mon, Tues, Weds at the minute. This was on recommendation from HV. She has been settling in since January and still can get extremely worked up (if any of the children go near her!) hence the short hours.

So ashamed to say we have been relying on DW's parents a lot.

I will look in to that crisis loan thing, thank you.

Sorry a question, is direct payments something that ss pays out for other people to come in and care for DW or have I gotten that wrong?

I really don't think DW would let someone else do the things her parents and I do for her.

[Devilishpyjamas]

She could use DP's to pay Her parents (providing you're not in the same household).

[Notimefortossers]

Are your parents around to share the support with DW's parents? Sounds like she's very lucky to have you OP. Please try not to worry. These things always have a way of working themselves out. You will be ok

[Notimefortossers]

Yes that's a good idea Devilish

[SisterMoonshine]

Well I did mention Direct Payments with a view to employing someone else as it seems her parents are out of the picture for helping now.
And really it's no good if she is dependent solely on you.
Your wife would be involved in the interviewing/recruiting who she feels is best.
But I understand that employing a stranger for personal help is easy to suggest, but the reality is different.

[VimFuego101]

I agree with others - I can't imagine how she will manage with a new baby on her own, you should get the ball rolling now. Do you pay for your daughter's nursery? I believe in certain circumstances the 15 free hours can kick in earlier than 3 years old, if the child would benefit from attending nursery. Maybe someone on here can confirm whether that is true and how to go about applying for the free hours.

[Devilishpyjamas]

I have to say though, I would look to expanding the support system via other carers as well. I have a severely-autistic nearly adult son and the reality is he'll need a whole bunch of different carers whether he wants that or not. There are specialist agencies out there who are very aware of autism & the needs of this with autism who can help with this.

Her parents won't live forever & you cannot do it all & it's kinder to do the transition while they are around & still able to do some. Sorry if that sounds harsh but with my son transitioning to adulthood reality is very much on my mind!

[Devilishpyjamas]

Ah moonshine already said that - I agree.

[WorriedDad75]

Thank you.

It might work but I can't see it iyswim.

It takes her a very long time of getting to know someone regularly before she will speak or even give eye contact.

We'd known each other a very long time before we got to know each other!

Her personal space is also very important to her, major meltdowns occur if anyone she doesn't know extremely well gets in it. She only just tolerates me helping with some things, her parents more so.

Thank you for all the advice. I will make an appointment at CAB tomorrow and go from there.

And try not to crap myself too much in the mean time!

[WorriedDad75]

Devilish no that didn't sound harsh actually it's quite helpful!

VimFuego101 DD already has 15 free nursery hours as we aren't very well off even with my job.

[onlyoranges]

Are you only getting part of PIP? Can you re-apply/make an appeal for the other component? Are there any disability organisations in your area? They can be great at helping you get the wording on the forms right as often when you feel stressed can be hard to think straight. They will do a benefit entitlement check for you to. PIP is classed as a 'passport benefit' and once you are acknowledged as being entitled for that it can be much easier to ensure you claim you full entitlement with other benefits.

I am not sure what your salary is but leaving work to live on benefits can be a tremendous drop in wages and a number of benefits are not means tested so you could claim whist still earning. Also it can be very challenging for your mental health to be a full time carer. I cannot say how much I admire people who undertake that role, they really are an inspiration but its not for everyone.

I would google a local disability organisation (ours is great) and talk to them about your situation. They will also be up to date with all the cuts which the government has made and then you can work out whats best for your family both in terms of care and finances.

[TattyDevine]

I hope things work out for you guys. You all sound really nice.

[WorriedDad75]

Onlyoranges my wage is about 12,000 a year depending on overtime.

DW receives enhanced daily living component of PIP. The adviser we spoke to on the phone for the national autistic society felt we should have gotten mobility, due to the fact DW can only drive local roads she knows with someone in the car with her e.g to the doctors and back. An unknown route is a no no and sends her in to a panic, this has caused accidents in the past. If she encounters a traffic diversion she will simply stop the car and not move, one of us has to drive her back home immediately.

However DW's mum didn't think we should 'push it' at she'd heard stories of people losing part of their claim when appealing so we never did.

My parents both work full time, I'm afraid they wouldn't be able to help at the times we'd need it.

[WorriedDad75]

Thank you Tatty, we are sometimes!

[GruntledOne]

You absolutely need to contact Social Services and ask for care assessments for both your wife and daughter. Please do it today.