We can't afford anything

arghhhh

My husband and I are in our 40s, we have 5 young children and after a car crash in October 2017 I have not worked. I previously worked full time, 5 days a week. I am autistic and have fibromyalgia which is since the crash. I have days where I can't move and I recently went NC with my abusive mother on Christmas Day. My husband works long days, 6 days a week and three of our children are also autistic; one of which also has ADHD. I have to home educate them (since January 2018) due to being in a rural area and the only school (within an hour of our house) failed our children massively.

At the end of 2021 I applied for PIP for the first time and was granted £60 per week in February 2022. I also applied for DLA for two of our autistic children last year and one was granted at £60 per week and the other was refused. I have been going through a very stressful appeal process and the tribunal is tomorrow. I really cannot cope with conflict. I'm dreading it so much. I just want someone else to do it, but because they're home educated by me and my husband is at work for most of the hours that they are awake, it's down to me. My pain is made worse by stress and my heart is pounding, just thinking about it all. My husband has had to take the day off so I can do the tribunal at home on our landline, because I can't do both the tribunal and watch all of them. I have no clue how long it's going to take either. The reasons they stated in the letters they sent me, listed things that I hadn't even wrote. It stated that I wake him up in the middle of the night to eat - I have read the forms that I wrote and there isn't even anything that could be mistaken for this. It goes on to blame home education for his lack of socialising skills and states that he doesn't socialise at all - again, untrue! I have wrote that he is home educated and nothing else and the person assessing has come to this conclusion. He goes to clubs, swimming lessons, parks, museums and plays with his friends. He's autistic! That's why his social skills are limited! This is my child that is autistic and he also has ADHD. Despite this and his previous school claiming that he was failing in everything, he has been studying microbiology for over 4 years and he's very bright. He's just turned 9! One of the most exhausting things is that he requires constant knowledge. He has to be learning all day and he struggles to stay still, which is one of the issues the school had with him. Apparently, I should be spending more than 2 hours with him throughout the day and night and despite way exceeding this and him getting up several times every night, somehow they have managed to overlook all of this. 

The only child that we receive DLA for is due to expire in around 8 weeks time and despite sending the renewal forms off weeks ago, I have yet to hear anything. I haven't had a mobile phone for over a decade, my husband has a phone on contract that he needs for work, our car is paid for, but also needed as he works far away and outside of public transport timetables so we have the bills associated with running a car. Our fuel bill has just jumped to almost £100 per week, our electricity is nearing £50 per week and we are in a rural isolated area, so we are not connected to gas. We buy heating oil, but we have to buy at least 500 litres at a time to get it delivered. We stopped using central heating last year, so we only use it for hot water now, which makes it last longer. We do have an open fire, so we spent a lot of time in our living room over winter. The fire wood is currently free, from trees my husband trims. All our money goes towards our mortgage, council tax, car bills, house/contents/building/life insurance, Twinkl and IXL (education accounts for the kids), husband's mobile, landline and internet (needed for home education), swimming lessons, water, oil, electric and fuel for the car (this is killing us). We forage throughout the year and usually make full use of our freezer, but I'm beginning to think we should eat the food in it and turn it off. The only luxuries we have are the postcode lottery and Disney+. 

Despite nothing changing, I can see the DLA for our child being stopped and not renewed and the DLA for our other child that is going to tribunal has been going on for over a year. So even if I appealed the decision not to renew, I could leave us for over a year without the money from it. I have been told that even if the tribunal votes in my favour at best they'll pay up 6 weeks later and at worst, HMRC can appeal it and drag it out even longer, just to refuse again. 

If DLA is cancelled for our only child that we receive it for; based on our current outgoings, we would have £38 left a month to buy food for 7 people! The luxuries we would be cutting would be the postcode lottery and Disney+. Realistically, we're going to have to also cut the swimming lessons, Twinkl and IXL too, which are all educational. I'm very angry. The school failed our children, refused to acknowledge their needs, punished them for their illness and through tax, we're paying for the school system, whilst also struggling to afford educational resources. Then to add insult to injury, after years of home educating, when we finally applied for DLA, they refused one of them and gave made up information as the reason! My husband is in constant pain. We just had to buy a £20 tens machine for him on our credit card. He is killing himself to provide for us and it's really getting to him. I feel like a massive drain on my family. We don't have holidays, we don't drink or smoke, we don't eat takeaways or eat out...I'm really worried about Christmas and upcoming birthdays. I'm not religious, but I'm praying for a miracle every day.

My mum alienated me from my family and I have nobody other than my husband to lean on. We've never missed a payment, but at some point we will have to buy food. If we lose the house, we have nowhere to go.

I am exhausted, my husband is exhausted. I'm so scared that we're going to lose our house. 

I don't know what to do. Any ideas please?

Savvy_Sue

Can I check whether you have asked for any support from the NAS, IPSEA (although that may not be appropriate) or any of the home education groups? eg Education Otherwise

Benefits and Work may also be useful - there's a lot of information there, some of it may help you prepare for the tribunal. There are also links to help you check you are claiming everything possible. 

It is probably too late to get in person help for tomorrow, but you may find some help and support from those websites tonight. 

Pollycat

Maybe repost the benefits part on here:
Benefits & Tax Credits — MoneySavingExpert Forum
Very good, knowledgeable people on there. They may be able to help with explaining timescales etc. 
Unfortunately, as Savvy_Sue says, it's probably too late for specific advice on your tribunal call today.

And maybe post here about your finances:
Debt-Free Wannabe — MoneySavingExpert Forum
Again, helpful, non-judgemental advice about reducing your outgoings.

Talking about health - both you and your husband sound extremely stressed. Have you spoken to your GP?

Spendless

Unfortunately it's likely to be too late for your tribunal today but I'd also suggest getting a charity involved. I used to volunteer for one that helped with form filling. I'm not familiar with what happens at appeals and if you get chance to speak but at the very least I'd have what you sent as your application and the information in their reply which is incorrect with you just in case you do get asked about it.

I'm not surprised in the slightest about what you say about the kids former school not meeting needs and punishing them for their disability, I hear the same story time and time again. I went through very similar with one of mine. Did any of them have an EHCP? Have you  been  in touch with Sendiass?  https://www.kids.org.uk/sendiass

I see you have a mortgaged property. Are you on the best deal, can this be looked at? Is selling up and moving somewhere more suitable an option? Maybe to somewhere which is closer to work for your DH, has a better selection of schools and maybe where you could establish a support network for yourself? 

Are all the children currently in swimming lessons? Are these to learn to swim or to go up through the swimming grades? I do remember a few years ago lady with a large family posting about her finances  and her kids swimming lessons, and the advice she got was to just have them learn 2 at a time, starting with the ones most in need of them - from memory I think this was the one on the brink of passing and the other more likely to be wandering near open water! Once one was at a sufficient level they stopped and the  next one re-commenced. I do however know from mine depending on areas you have to go on waiting lists so can't always do it that way!  

powerspowers

Good luck with the tribunal today. Have some notes to hand to make sure you don’t miss anything. 

Other things to consider- Have you had a benefits check- are you entitled to carers allowance? UC? 

Your local council may have support with fuel costs- search household support fund plus your area. They are all different though. 

arghhhh

Savvy_Sue said:

Can I check whether you have asked for any support from the NAS, IPSEA (although that may not be appropriate) or any of the home education groups? eg Education Otherwise

Benefits and Work may also be useful - there's a lot of information there, some of it may help you prepare for the tribunal. There are also links to help you check you are claiming everything possible. 

It is probably too late to get in person help for tomorrow, but you may find some help and support from those websites tonight. 

I've tried NAS and they didn't tell me anything that I didn't already know. I've made a note of IPSEA and I will look at it later, because I've not heard of them. 

We are not intitled to most things due to my husband's income being over 16,000 before tax.

The phone appointment was meant to be at 9.30, so I don't know if they're running late.

arghhhh

Pollycat said:

Maybe repost the benefits part on here:
Benefits & Tax Credits — MoneySavingExpert Forum
Very good, knowledgeable people on there. They may be able to help with explaining timescales etc. 
Unfortunately, as Savvy_Sue says, it's probably too late for specific advice on your tribunal call today.

And maybe post here about your finances:
Debt-Free Wannabe — MoneySavingExpert Forum
Again, helpful, non-judgemental advice about reducing your outgoings.

Talking about health - both you and your husband sound extremely stressed. Have you spoken to your GP?

I've spoken with CAB, but they were unable to assist during the tribunal for various reasons; I can't remember exactly. They offered to help read what I had wrote in response, but I was quite thorough. They went through benefits and suggested carer's allowance, but we are on child tax credits and the tax credits will go down more than the carer's allowance and it is only paid for one child, so we would be worse off. It may be different when we're switched to Universal Credit.

I've been trying to get the doctor to refer me as I have been told by relatives that they suspect I'm bipolar and I've recently come to the conclusion last year, that I think they are right. I think it probably stems from my relationship with my mother, but do you know what happens when you beg and plead the doctor to refer you (whilst also crying like a baby)? Nothing! I've spoke to three doctors on the phone (because that's how you 'see a doctor now) and they've all done the same. I have wrote a letter, to make it more official, so I expect to hear back soon. My husband needs a break from work, but all his holiday time from work is used up for appointments, because it takes both of us to manage them, with three having additional needs. He rests at Christmas and I do really worry what all the strain is doing to him as he's had heart issues in the past.

arghhhh

Spendless said:

Unfortunately it's likely to be too late for your tribunal today but I'd also suggest getting a charity involved. I used to volunteer for one that helped with form filling. I'm not familiar with what happens at appeals and if you get chance to speak but at the very least I'd have what you sent as your application and the information in their reply which is incorrect with you just in case you do get asked about it.

I'm not surprised in the slightest about what you say about the kids former school not meeting needs and punishing them for their disability, I hear the same story time and time again. I went through very similar with one of mine. Did any of them have an EHCP? Have you  been  in touch with Sendiass?  https://www.kids.org.uk/sendiass

I see you have a mortgaged property. Are you on the best deal, can this be looked at? Is selling up and moving somewhere more suitable an option? Maybe to somewhere which is closer to work for your DH, has a better selection of schools and maybe where you could establish a support network for yourself? 

Are all the children currently in swimming lessons? Are these to learn to swim or to go up through the swimming grades? I do remember a few years ago lady with a large family posting about her finances  and her kids swimming lessons, and the advice she got was to just have them learn 2 at a time, starting with the ones most in need of them - from memory I think this was the one on the brink of passing and the other more likely to be wandering near open water! Once one was at a sufficient level they stopped and the  next one re-commenced. I do however know from mine depending on areas you have to go on waiting lists so can't always do it that way!  

I contacted CAB, but they said the best person to write the forms would be me, due to home educating them. Unfortunately they are still in the assessment phase of their autism and ADHD diagnosis, but to be on the waiting list for a referral they have to be seen by a specialist. There are no professional's involved other than the one's doing the assessments and the ADHD and autistic child is on a waiting list with SALT, so nobody can back me up. Our older autistic child sees a specialist dentist due to a medical condition he has and she has wrote a very powerful statement about what she (a doctor) has observed. He basically hasn't spoken to her in the two years that he's seen her.

We home educate because the school failed and that is the only school available to us. We took them out hoping to get a diagnosis (the school refused to refer) and then put them back with an EHCP. Little did we know that it would take four and a half years to get them to see someone. I have been in touch with SENDIASS but the person I spoke to said it was very unlikely that the council would grant EHCP's for the two of them without a diagnosis or report from a professional. So we have to wait for this process to complete. On the HMRC website, it states that you don't need to have a diagnosis to claim, but that is far from what we've experienced. Almost every objection raised has commented on no diagnosis or that home education is the cause of all the problems!

They were on a waiting list just before the pandemic hit and only just started swimming lessons in March because of COVID and a backlog. None of them can swim. 11 year old autistic child just stands in the water and won't talk. They have suggested one to one lessons for £50 for 3 thirty minute slots, but with the renewal not decided, we can't possibly take anything like this on. I tried a couple of charities to see if they would fund these, but they also need a diagnosis. 

arghhhh

powerspowers said:

Good luck with the tribunal today. Have some notes to hand to make sure you don’t miss anything. 

Other things to consider- Have you had a benefits check- are you entitled to carers allowance? UC? 

Your local council may have support with fuel costs- search household support fund plus your area. They are all different though. 

Thanks. CAB checked, but if I claimed carer's allowance, we would be slightly worse off, since we're on Child Tax Credits and they deduct more than carer's allowance gives. 

The council won't help because if a household earns over £16,000, they don't class them as low income, despite 7 people living here, 4 being disabled. It doesn't matter if the household is one or multigenerational family of 17, that £16,000 threshold is all they're concerned about.

They still haven't called. Does anyone know if they start the tribunal without you and then call later?

arghhhh

Spendless said:

I see you have a mortgaged property. Are you on the best deal, can this be looked at? Is selling up and moving somewhere more suitable an option? Maybe to somewhere which is closer to work for your DH, has a better selection of schools and maybe where you could establish a support network for yourself? 

We are on the best deal. We had to adapt the house so that there were extra bedrooms, whilst two share, two of our autistic children need to be separate on a night. We have spent the last five and a half years adapting the loft, which was just completed last weekend and putting in a downstairs bathroom for me - I sleep downstairs. I'm aware that there are grants for making adaptions to your home, but unfortunately you have to have a diagnosis for that too. I only got mine in September 2020, after 3 years of constant pain and every drug they give me does nothing. The system is set up to fail. So, anyway, because of all the adaptions, our house has increased in value, so our equity is bigger and our interest rate fell when we renewed our 5 year fixed rate. Our mortgage provider was our cheapest option (for the first time ever) and there were also no additional fees. We have looked for other houses, but we wouldn't have been able to afford the house we currently have when we were both working, which is why we bought it, with the intention of renovating it. It should have taken 18 months to 2 years, but I was injured within the first year and my husband has been left to do all the work himself and we haven't had my income. If we bought another house, we wouldn't be able to afford a like for like anywhere else (our area is cheap). The house we're in is over 2 hours away from where we previously lived and we moved here because it was a cheap and quiet area to live in. We won't qualify for a suitable mortgage on just my husband's income and the money we would be able to get on my husband's income would only buy us a 3 bedroom house. Buying a house with the hope that we could claim the grant to adapt it, would be a really big risk and after all this hassle with trying to claim DLA, I can see it being another up hill battle.

Spendless

Which of you don't have a diagnosis? That seems to be where the stumbling block is, if I've read/interpreted your replies correctly? Good luck today hope it's a positive outcome.