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?

Claim Income Support as her carer. Carers don't have to seek work and are, by and large, left alone. You will get significantly more than £12000 a year in benefits- a decent amount of IS, plus housing benefit, child tax credits, child benefit, council tax support and carer's allowance. Please put your online details, I think you will be surprised. You situation is what the benefits system is for!
Other than that, please get a SS assessment for your wife. You should be able to get some direct payments to help with her care. Other people are right in that she can use direct payments to pay her parents so that they can cut their hours at work.
Good luck with the new baby

Can you try and speak to National Autistic Society for guidance? We also used a local branch of Radis, who were excellent in advocating and obtaining financial support and mentoring for my adult autistic daughter - we never knew how much support was available.

wow, sounds tough.

probably worth making an appointment with the CAB or so to get a detailed as to what benefits you are entitled to. It might be more than you think.

what is your housing situation? if you are renting I would think you would get help (housing benefit). Not sure though what help would be available if you are having a mortgage.

request a assessment through social services urgently. Hope you find a solution for you and your family.

I'm glad you're local Radis were helpul MrsFriskers. My local branch is horrendous, so do just check it out before using them OP. I'm sure your DW's parents love her very much and have done the absolute best they could for her, but in many ways I don't think they've done her any favours. I definitely agree that it's a good idea to start introducing other carers and a wider support network. Heaven forbid, but imagine if anything happened to you or her parents - she would be completely and totally lost. Specialist carers will completely understand your DW's issues with allowing strangers to care for her and will be able to build a relationship slowly. She needn't have a care package forced upon her.

Choc we have a mortgage but luckily it's under £300 per month so hasn't been a big strain.

Thank you all again for your advice, I didn't realise we'd be entitled to anything apart from pip and tax credits! Still very nervous but will go through it with CAB.

Notime no they didn't do get any favours, they've said they know that now. I do think they did what they thought was best at the time though, they thought DW would face a lot of stigma if it was known how different she was re: personal care and safety, not just 'bright but eccentric'.

I have actually just checked out the 'entitled to' calculator and if that's true we should be fine if it comes to me leaving work. It's actually more than I earn, though not sure how secure is feel relying on it.

I can't explain what a huge weight that has taken off us right now.

DW has been very anxious since last night, I know she worries a lot about ss taking DD away if it was just her looking after them and something happened.

Bless her, must be awful for her . . . you're a good guy OP

OP,under certain circumstances you can get help towards the interest of your mortgage

www.gov.uk/support-for-mortgage-interest/overview

might be worth looking into.

OP my husband has had to take a career break to look after me and our 5DC,I became disabled and seriously ill a year after we had our last child.

Our youngest DD8 is also disabled and autistic and one of our DS14 is also autistic and has dyspraxia.

My DH was in the Police Force,he was earning more than what you are right now,but financially we've been fine.You should be entitled to disability allowance(or PIP)mobility allowance,child tax credit,carers allowance,income support.You should also be entitled to help with paying your council tax.

You should also be entitled to the Healthy start vouchers as well which you can use for milk,fresh or frozen fruit and vegetables or for formula milk.Your wife is entitled to them as while whilst she's pregnant and you'll get them for your children up until they're 4 years old.You'll also be entitled to free vitamins with that as well.www.healthystart.nhs.uk/

Check with your local council as well(look up your council online)as you could be entitled to free nursery places,free school meals,free milk at school(upto the age of 5)some even help out with the cost of uniforms and transport to and from school within a certain distance.

Hi op we are in a similar situation - i just wanted to point out in case you didn't know that you can apply for dla for your child who is going through autism assessment without the need for a formal diagnosis. It is just about whether they need more care than a normal child of the same age. Cerebra and contact a family both have very good online dla guides (not sure if you already claim dla for your child).

We applied for dla prior to autism diagnosis for ds now aged 3.5 and we were awarded high rate dla for 2 years. With dla for children you also get a tax credits top up (about £60-100 a week) so do let them know if you claim it.

Fairylea that's interesting, I think I've been sticking my head in the sand a bit re: DD's assessment, but she does need a lot of extra care/planning compared to others her age.

Ohtheholidays and Choc thank you, lots of things for me to look up there. I feel a bit ignorant, I had no idea this amount of extra support was there.

Notime, thank you. You have been very helpful

Definitely apply for the dla. Just please make sure you read the guides I mentioned as they are making it harder to claim so you need to use the terminology / correct jargon to meet the criteria and explain how your child meets every point. It's well worth applying for.

Hope things feel better for you all soon.

Call social services, have an assessment, get a number of hours support per week and ask for it to be paid via direct payment, employ a personal assistant for your wife. It won't cover all the time you are at work but it will cover a portion.

WorriedDad - apply for DLA for your dd, Fairylea is correct it can be awarded pre diagnosis, the criteria are that your child needs help above that of another child of the same age. You will need to use the correct 'jargon'. I can't recommend Cerebra and their guide enough, it is invaluable. My eldest (ds1) has Aspergers and we were awarded DLA before he received his official diagnosis.

w3.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

I work in adult social services so feel free to pm me if you need any advice.

WorriedDad not ignorant at all,it was exactly the same with us at the begining we had no idea what we were entitled to and unfortunatly the goverment still aren't being transparent when it comes to making sure that those that need the extra financial support are fully aware of what help they can actually receive.

With your LO we found Cerebra an amazing support,a lady came round and sorted all the DLA forms for our DD,she knew what to put down to make sure that we got everything that our DD was entitled to.

There is lots of support and help via so many charity's now as well.Family Fund is one of them,we haven't used them before but we know family's that have and they said they were brilliant.

www.familyfund.org.uk/faqs/how-do-we-apply

You can apply for a grant once every 12 months,people use the grants for items they may need for the house,a sofa,bed,electrical white goods,play equipment for they're disabled child and siblings,a holiday,help with getting a car.All sorts of things.

Thank you.

I've had a read through the cerebra guide this morning and it's very useful, wish we'd had something like it for the pip forms!

Will be dropping into CAB and requesting a DLA form on the phone later. Fingers crossed it's all starting to look much less bleak.

I'll update when I have news, so glad I posted!

Good luck WorriedDad75, in turn, you have also given me hope that my daughter will eventually have a loving and supportive partnership.