We can't afford anything

arghhhh

Spendless said:

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. 

I am diagnosed with Fibromyalgia and was referred for autism screening. I know I'm autistic. I can't get referred for bipolar and without a diagnosis, I can't access medication for bipolar. There are no over the counter bipolar meds.

We have three children that have been identified as needing autistic assessment, but one doesn't have as many needs as the other two, so we haven't applied for DLA for that child. We have one child that is selective mute - I don't need a diagnosis to tell me that he refuses to talk. He only goes mute with me for about 10% of our conversations, but with others he can be 100% mute. He won't use body language, eye contact and he won't use British sign language either (even though he knows this). He's autistic. I've worked with autistic children. My qualifications are in child development, but without an outside professional diagnosis, he's not classed as autistic. The clinical psychologist and psychiatrist are collating their information through observations and the forms I filled in and said they would be in touch by the end of this month, but I'm not sure if they will have concluded if he is autistic from this or if they will need further observations. The psychiatrist agreed that they would be making suggestions for help in many areas of his development, not least his socialising issues. Our other child is clearly autistic. They are all very bright children, but the two I've claimed DLA for will not stop learning, which probably doesn't sound like a bad problem to have, but it is all consuming. They are both of primary age, but are learning A-level subjects in science and various languages, non of which I'm fluent in. So I'm learning alongside them and it's all day every day, 7 days a week. I was hoping to get an EHCP and fund a science tutor for half an hour once a week, but this is the one that I'm meant to be having the tribunal for today. They still haven't called!

It looks as though the two children will be diagnosed as autistic before Autumn and one has been referred for ADHD screening too, which I don't know if that's going to be a few weeks or another 4+ years before we have an answer for that. My main objective is to get them diagnosed before puberty and allow us options in the future, should we be able to put them back in a school. If they have an EHCP, they'll have to listen to us and take their needs into account. 

arghhhh

They finally called just before 1pm (they were running late) and it lasted about ten minutes. Basically, they've chosen to delay it because I they don't have a diagnosis yet! He's 9 and half of his life has been on this waiting list and going through the assessment process. The system is set up to fail. The government has made it so that assessments take years and DLA needs a diagnosis, but would they backdate to the day he was born? Of course not. Even if the tribunal eventually votes in his favour, they've saved tens of thousands in him not attending school and over 8 years of not having to pay DLA!

My husband took the day off for this; just for it to be delayed, with the next tribunal date to be beyond what ever date a diagnosis is given. 

I completely fell apart too. 

Spendless

You need support with this. I know you've said you went to CAB, but their help will be as good as the advisor in that area  working there - luck of the draw how good they'll be. I'd try more specialised charities  aimed at autism for example. Same for help yourself. My friend has bi-polar it took her 19 years to get diagnosed with it despite being in and out of hospital herself as an in-patient since she was in her late teens! So, yes it's difficult but don't give up the battle

arghhhh

Spendless said:

You need support with this. I know you've said you went to CAB, but their help will be as good as the advisor in that area  working there - luck of the draw how good they'll be. I'd try more specialised charities  aimed at autism for example. Same for help yourself. My friend has bi-polar it took her 19 years to get diagnosed with it despite being in and out of hospital herself as an in-patient since she was in her late teens! So, yes it's difficult but don't give up the battle

I think my mental health is my biggest issue right now. I'm really not coping well with all of this at all. I can't even begin to describe how much I hate conflict. I've been so stressed and shaking with nerves thinking about how today will go, only for it to be delayed. The person who was representing DWP was very negative and told me that there was no way it would be going in our favour as it stands, with no evidence. I'm so frustrated. I have no evidence because I've been on these waiting lists for almost half a decade. They don't accept appointment letters or letters stating they are on waiting lists (which I have stacks of) and they don't seem to value referral letters, even though I've told them that they have to meet certain criteria to be referred. My family have battled with my mental health since around the time I started high school. I've tried to commit suicide once when I was 12 and again when I was 29. I often feel suicidal over things that seem so minor. I have a problem with telling people no, so I will take on far more than I can cope with and I just want to not be here. Making a cake for a birthday, helping a charity with making craft items... once I've said yes, how can I back track and say no? My husband used to call my parents to come and help him because he didn't understand what was happening to me. Thinking back, I can see very clearly that I was bipolar, but at the time I couldn't. I try and remove myself from everyone, but I can't because 3 of them need constant supervision and I only have this option when my husband is at home. I worry about the impact my untreated mental health issues will have on my children and do contemplate how much better they would be without me. I know the battle for a diagnosis is a long one and I've basically got to be a risk to my children, but I feel like my high and low moods are damaging and I feel guilty and then I feel even lower and I struggle to find a way out of it. I barely sleep and it's hard to find the beginning of one day and the end of another. Prevention is better than the cure but I can't even get a referral, despite family members willing to speak up for me, although this is just down to my husband now as I have no contact with any of my blood relatives outside of my husband and our children.

Grumpy_chap

I can't comment on the immediate situation or the benefits entitlements but do add my tuppence-worth to the suggestions to visit the DFW (debt free wannabee) boards and prepare your SoA (Statement of Affairs) as a tool to assist with managing outgoings.

It's clearly a very difficult position and good luck with finding solutions.

I'll also add one possible area that may be a source of support if applicable to you.  I don't think you have mentioned what work you did or your husband do.  With some professions, or sometimes via Unions, there are benevolent funds that can be available to provide support - if that might be applicable to your family it must be worth a try.

2budgeteers

This sounds like a very difficult situation but you have reached out and it takes a lot of mental strength to do that so well done. 

All I can think of are these things:

FOOD: shop just before closing or be bold and ask when reductions occur and purchase at that time. You can save 75%. Join the OLIO app, it is free and although you are remote your husband may find someone near his work to collect from. You collect free food that is close to best before or use by. Batch cook and use lentils to bulk out "meat meals" like shepherds pies to use less meat. Call your council and see if they have a list of food banks and food hubs (not means tested) where you can collect free toiletries and food without evidence of benefits. See if you can get hold of free or cheap seeds to grow your own food if you have a garden. 

EDUCATION: I am sure that there are home schooling groups online where you can seek help from others on what they did in terms of seeking advice and getting help from parents groups online. You can also seek general autism support here. 

WORK: Could your husband find out if his work has an employee assistance program which you could access yourself. These offer free counselling sessions-up to 6. Can your husband lift share for at least some of the week to minimise fuel costs. Either with someone from his work or via carshare websites (if you Google there are some). 

MENTAL HEALTH: see if you have IAPT in your area or push hard on your GP I not. iAPT is mental health provision from the NHS which you self refer to and you don't need your GP to. Also see if your husband can aswell. 
Practice self care for yourself so you don't reach burnt out for too long, things like a book, meditation from YouTube, spending time outdoors, focus less on those that are toxic (harder said than done but write down how they make you feel and then put it aside) etc. 

BILLS/ECONOMICAL: shop around for everything you have and see if you can get anything cheaper. Look around and see what you can sell from the house. Block up any heat or electricity draining sources, e.g. Use wind power to dry things not tumble dryers. Wash clothes less. Re use water from washing up bowls for watering. Go into websites like Freecycle, freegle, trash nothing, gumtree Freebies, Preloved when you need to buy things to see if anyone is offering for free on there, if not then second hand before new. 

Sorry if teaching to suck eggs, just trying to think of doable things to alleviate situation quickly. 

Good luck 

arghhhh

Grumpy_chap said:

I can't comment on the immediate situation or the benefits entitlements but do add my tuppence-worth to the suggestions to visit the DFW (debt free wannabee) boards and prepare your SoA (Statement of Affairs) as a tool to assist with managing outgoings.

It's clearly a very difficult position and good luck with finding solutions.

I'll also add one possible area that may be a source of support if applicable to you.  I don't think you have mentioned what work you did or your husband do.  With some professions, or sometimes via Unions, there are benevolent funds that can be available to provide support - if that might be applicable to your family it must be worth a try.

I've got spread sheets and manage our outgoings, but me not working was never the plan. We thought the home education route was going to be a short stop gap between getting a diagnosis and the obtaining a care plan, which would have allowed them to return to school with their needs acknowledged. The financial impact is immense. The house we bought was derelict and we have essentially lived in a building site for the first four years, with half of downstairs still having bare brick walls. My lack of income, health issues and the added challenge of home education and children has just been a massive series of unfortunate events that have taken a massive financial toll. Now we have the fuel, oil and electric rises and I'm dreading winter so much more now.

I don't want to share too many specifics in case family members come across this. My husband looked to join a union, but he was told by the unions he contacted that a certain number of the staff had to sign up for the union to take him on and the numbers they required exceeded the number of staff. My fibro has made my qualifications useless now. I've tried finding work from home jobs, but I just fall out of the boxes. I can't drive and a lot of 'work from home' jobs actually require travel, which seems odd.

Savvy_Sue

arghhhh said:
My husband looked to join a union, but he was told by the unions he contacted that a certain number of the staff had to sign up for the union to take him on and the numbers they required exceeded the number of staff. 

What??? 

That is not my understanding: anyone can join a union - I think we have two people at work in one union and about 20 in another. We don't have formal representation or recognition, but any individual member can ask for help from the union. 

https://www.tuc.org.uk/join-a-union - you can work through that to find the most appropriate union even if there are no other members in his workplace. Considering that you have to pay to join, it's not as if they are doing him a favour by 'allowing' him to join. Even without official recognition it could be helpful. 

Again, this won't give immediate help. But years ago one of my colleagues did get funding for a short break for her family when they were going through a very difficult time, just because her husband was a member. 

arghhhh

2budgeteers said:

This sounds like a very difficult situation but you have reached out and it takes a lot of mental strength to do that so well done. 

All I can think of are these things:

FOOD: shop just before closing or be bold and ask when reductions occur and purchase at that time. You can save 75%. Join the OLIO app, it is free and although you are remote your husband may find someone near his work to collect from. You collect free food that is close to best before or use by. Batch cook and use lentils to bulk out "meat meals" like shepherds pies to use less meat. Call your council and see if they have a list of food banks and food hubs (not means tested) where you can collect free toiletries and food without evidence of benefits. See if you can get hold of free or cheap seeds to grow your own food if you have a garden. 

EDUCATION: I am sure that there are home schooling groups online where you can seek help from others on what they did in terms of seeking advice and getting help from parents groups online. You can also seek general autism support here. 

WORK: Could your husband find out if his work has an employee assistance program which you could access yourself. These offer free counselling sessions-up to 6. Can your husband lift share for at least some of the week to minimise fuel costs. Either with someone from his work or via carshare websites (if you Google there are some). 

MENTAL HEALTH: see if you have IAPT in your area or push hard on your GP I not. iAPT is mental health provision from the NHS which you self refer to and you don't need your GP to. Also see if your husband can aswell. 
Practice self care for yourself so you don't reach burnt out for too long, things like a book, meditation from YouTube, spending time outdoors, focus less on those that are toxic (harder said than done but write down how they make you feel and then put it aside) etc. 

BILLS/ECONOMICAL: shop around for everything you have and see if you can get anything cheaper. Look around and see what you can sell from the house. Block up any heat or electricity draining sources, e.g. Use wind power to dry things not tumble dryers. Wash clothes less. Re use water from washing up bowls for watering. Go into websites like Freecycle, freegle, trash nothing, gumtree Freebies, Preloved when you need to buy things to see if anyone is offering for free on there, if not then second hand before new. 

Sorry if teaching to suck eggs, just trying to think of doable things to alleviate situation quickly. 

Good luck 

FOOD: Our nearest supermarket is a two hour round trip, so we generally only go shopping once every 4-6 weeks, which saves on fuel. I preserve food, if we buy short dated food I'll make salsa, sauces etc and store in sterilised jars (that we reuse). We forage throughout the year; beech nuts, hazelnuts, damsons, elderflowers, elderberries, rose hips, wild garlic, cherries and blackberries. I freeze some and preserve others in jars. We're a vegan household, so we don't have the expense of meat and dairy. The most processed foods we eat would be baked beans, stock cubes, sugar and oil. We don't buy ready meals. I bought a 25kg sack of chickpeas a year ago and it is still going strong. Once a month, I'll make falafel into different shapes and using different flavours and freeze and it makes some hearty meals. So we are not currently buying food, but I'm aware that we will eventually need to buy food again and it's weighing on my mind. We have already chosen 'eat' over 'heat'. We don't use the radiators; we just used our fire on really cold days and brough blankets downstairs, which the kids thought was fun. If we have to use a food bank, what is my husband even working for? He's not getting any older and his back is in a bad way now. I collect and store seeds from food we grow. We bought some fruit trees for £5 each three years ago and we finally had fruit on them last year, but because they're near our fence, someone picked them clean before we harvested them.

EDUCATION: I'm a member of a few home ed groups on facebook, both national and regional and some even specific to ADHD and autism, but this seems to be the way things are. You just get ignored and if you say your child is autistic to a professional, without a diagnosis, you get a mouthful. Whether you give it a name or not, the challenges and needs are the same, they don't start from the day it has a label!

WORK: We are so rural, nobody he works with is on this side of his place of work. There is no option to car share, although my husband would be open to it, there just isn't anyone from his work out this way.

MENTAL HEALTH: All the toxic people in my life are my maternal family. I basically allowed my mother to abuse me, never spoke up and still haven't but my Mum has constantly being running a fake dialogue of who I am to anyone who'll listen to her and I don't have the strength to tell the truth because I know they wouldn't believe me. Only my husband and one other family member has seen a bit of who she is, until she turned on my children last year and I went NC from that day, which just happened to be Christmas Day, that we were hosting. We have a toxic neighbour, that rents some land near our house, but I think she has her only mental health issues, which got quite scary for a while last year as she was claiming our address was hers. Police warned her off and she's stayed away since CCTV went up. I'm going to look up IAPT, thank you. Anything that requires the GP to refer me seems to result in no, so it's great to know that there is another route.

BILLS/ECONOMICAL: When we go shopping, we generally go to several shops. We uses short date shops a lot. We recently did a car boot, but it was grim. We split the stall cost with someone else, but despite selling three quarters of what we took, we made around £35. 70% of our building materials have been repurposed or off facebook marketplace/gumtree. We don't own a dishwasher or a tumble dryer, but I do need to use the washing machine everyday (always full loads) to ensure that I don't overload the house with wet clothes and cause a damp issue. We buy toilet roll from Farmfoods where 18 months ago you could buy 4 18 packs for £10, that has now jumped to £17! We only go when we have vouchers and because the vouchers only last around 2 weeks before they expire, we buy quite a lot, which is now frowned on, but it's a two hour round trip for us. They don't deliver, so the Farmfood vouchers determine when we go shopping and then we'll top up anything else that we have run out of whilst we're there. 

I'm grateful for any advice. Thank you, I'm going to go and look up IAPT now.

elsien

I do think that you should head over to the benefits viewed and post there. Now that you are on PIP it may make a difference to your entitlement and as a family you may still be entitled to some UC. 

The 16K is a savings limit, not an earnings limit. It may also be that the work allowance lets your husband keep more of his earnings.
Are you claiming child tax credits? 
If you’ve not had a recent full benefits check, you have nothing to lose by looking at it again,