Had the most God awful day today

Hello Yorkshirelass,

  I'm glad it's over for you and that you have achieved the result needed for your situation, but also that you feel empowered by the experience,(This isn't always the experience for others,) but I know, all too well, about the time and energy it takes out of you and often at the expense of those who most need your care.

As for me, things have not been great. Since my court experience, even the most mundane of issues has become overwhelming for me, which is why I've not posted here in a while. Most days are a struggle just now. I'm finding with every hurdle, it takes more from me and seems to take longer for me to recover from. I guess i'm at the fringes of Carers Burnout, but more specificallly my faith in human nature has yet again been erroded to the point that I no longer feel able to reach out and ask for help or advice from anyone.

Support for the boys is either non-existant or fraught with anxiety and all of us have been plagued with ill health of late. My sons migraines have increased with his exam and life stress and my other son remains a challenge in his quest to find balance in his work/home life and peace in what should be his sleeping hours.

It's hard at these times to find purpose and direction and i'm struggling to get others to understand how badly i'm coping with it all. The familiar retort; that I appear able and seem to have things under control, belies the true extent of my angst and my vulnerability as I battle to extend myself to others, only to find they have another agenga or don't truly understand what a struggle it is to support my Aspie sons as an Aspie parent or indeed how little sense I can make of it all at times.

My hope is that it will pass and things will improve, but this familiar well-trodden path is one I recognise and one that causes me to consider that a life of total isolation, with perhaps just my animals as company, would be preferable to making contact with fellow humans.

I'd love to report something more positive on my front, but i'm struggling to see it frankly. I'm taking each day at a time and praying for something positive, which always seems to allude me.

I hope your trials become easier and life is treating you all well.

Take Care

Coogy.

Hi Coogy,

Just wanted to update you to let you know I won at our Tribunal! I found it  a challenging experience, but I must say the panel were firm but fair. I arrived at the court early  which gave me time to 'soak in the atmosphere'. I had to deliver my evidence without support from CAB (that's another story!) but I actually felt more in control that way and clarified the situation 'warts and all'. I came away feeling mixed emotions but mostly of anger that I'd had to spend precious time preparing (like for an exam)- however the experience has given me the confidence to keep fighting! 

Hope you are doing ok.x

Thanks for the kind words socks. I try my best.

I know I have to work harder than most to get it right and I knew I was clear when talking to the advisor and thankfully, that was confirmed. I guess it shows that the communication difficulties arn't always our fault after all.

I feel sure I get things right quite a bit of the time, But I hate the patronizing attitude that sometimes comes with declaring you have difficulty and asking for things to be repeated or explained further. It's probably why I seldom do declare I struggle. No one wants to feel more stupid than they already do.

When your dependance or reliance on advisors is so great, it's always such a shock when you are the one that suffers for others miss-advice. Generally, no one admits to getting it wrong when that happens and you are left holding the can. This time someone has admitted fault, but i'm still holding the can.

Coogy,

The world needs more people like you with a sense of right and wrong and the desire to do your bit. We could do with fewer people who take advantage and do nothing to contribute (from bankers to the scroungers). Don't ever forget that you are one of the good guys.

Thanks for your kind words socks.

The thing is, I don't understand the benefits system at all and that leaves me and my family vulnerable. When the advisors don't understand it either, you know you are in trouble. The bad advice came from HMRC themselves. The trouble is the debt I now face because of their misinformation.

One advocate seems to think we should be entitiled to more support than we are getting and probably should have been for some time. This makes me feel quite stupid, as it means we've probably been slowly drowning un-necessarily, add to it, the time it's taken for me to get the authorities to address this issue and the debt mounts considerably. How do you recover from that?

It does much to reinforce your feeling of inadequacy when you can support others with practical advise, words of comfort and tips on a forum, but struggle yourelf in everyday understanding of your entitlement and the way things impact one another.

What upsets me, is that lives have been lost over less and it's the vulnerable that suffer when an individual working for a statutory body, 'drops the ball' as you put it. Despite my best efforts to understand and get it right, I struggle and this is not made any easier by miss-advice from those supposidly in the know.

My son has been let down and as his appointee I feel responsible for that. I'm not sure that the advice from the CAB for my son is right either though. (Give up work and claim ESA) That's dispicable! What ever happened to equality?

Is this really the right message to send our disabled youth?

In thinking outside the box and by working as a part-time, supported, self-employed individual, my sons managed to achieve purpose in his life and find something he can do rather than be faced with all the barriers of what he can't do.

Yet the sustainability of that, is now in jeopardy because of the systems lack of consideration for Autistic individuals with learning disabilities who want to work, but don’t have the right support and whose parents find themselves in financial strife because of the slow or delayed progress of a statutory body that leaves them in debt. And all because the parents try and enable a young adult, who dares to dream of a life beyond benefits.

If ever there was a clearer indication that those with disabilities are being let down, this is it!

I have no issue with the reduction of the benefits bill in Britain if it's fair and just. If I did, then I wouldn't be trying so hard to ensure my children have work prospects now and in the future. The trouble is, those with the level of disabilities my children have, face huge barriers to work, even from the very bodies suposidly set up to help them.(ATW)

Can you tell me then, when & how are the rights, dreams or voices of those with disabilities actually going to be honoured, realized or heard when faced with such barriers and lack of understanding?  

ATW is just not geared up to undestand Autism. Add that to the equation that not only are parents supposed to support their childs considerable care needs, but support them in their work also; because of the lack of support from those bodies who are supposed to enable, and you have parents pushed to breaking point with support and care hours that would rival a newly qualified doctor on the wards!

As full-time carers, your options to change your families financial situation are often extremely limited and you have little choice, but to resort to some form of support. Seems like those who are victims of circumstance or vulnerable will be hit hardest by any cuts then.

I know we can only act on the advice we are given, but when that advice is consistently wrong or advisors and government bodies stop caring about the impact of such miss-advice, lives are lost, dreams are crushed and the victims are left with their lives in tatters, facing homelessness, branded as scroungers, accused of fraud or simply viewed as lazy. Life for those on the spectrum is difficult enough, without the added stress of negligence from those who are supposed to advise them.

As the Aspie perfectionist that I am, I've always tried to do my best and follow what's right, however it's the constant reinforcement that you are getting it wrong that causes you to question your purpose and if your life is truely of any value.

Sorry socks, but I've hit rock bottom today and I'm all out of inspirational phrazes or grey tinted thinking. Feel the lowest I've been in a long while and I guess Black and white is sometimes all their is!

So disolusioned. SO very low.

Hi Coogy,

Don't feel as though you are alone! The benefits and rebates systems are complicated and there are probably very very few people who understand it anywhere like as well as you do. This is one reason why they are bringing in theUniversal Credit according to

www.gov.uk/.../simplifying-the-welfare-system-and-making-sure-work-pays

(Of course they want to cut the bill as well and that means that some people will lose out and suffer)

Lessons learnt:

You survived and defended yourself well in court on your own - give yourself a big acknowledgement for that.

The justice system didn't simply trample over you. The judge did things properly. You have now won some time to get this sorted.

The people at the council were doing their job correctly.

Someone gave some bad advice and you got into trouble for that. People are human and the advisers on these helplines are not well paid and sometimes they drop the ball. Try and get them to quote actual regulations that you can check. Have you got them to admit their mistake in writing?

What to do next:

Try and spread the burden around. Don't take it all on your own shoulders. Declare your disability and accept the help that should come from that. Ultimately the council will run services to help people with disabilities (see the thread from MO4B - "geeeh I give up" for an example) and they should be helping to guide you through the maze of benefits.

Don't be hard on yourself and don't go overboard in thinking the whole system is useless. i.e. don't fall for a bit of black and white thinking. If you do your best then you should have no regrets.

What was said in court by the council representative (That the extended entitlement to another benefit would aftect my entitlement to CT.) doesn't now seem to be the case, I'm told.

Spoke to some one from the council yesterday, who now says we are not entitled to support, despite our low income. How could this be? Given the misinformation I've been given on a fairly constant basis so far from HMRC and DWP, I'm not sure where I stand now!

To have HMRC admit they misadvised me this time, (Only after they said their was no record of my call) is something at least, but where does that leave the claimant? In debt for something they were advised they were entittled to!

Do these advisors have any clue of the wake of devastation they leave for people with Autism or learning difficulties?

If I struggle, How would my sons who are way more severe manage?

I feel vindicated in one sense and yet devistated in the other.

I'm not sure I trust anything anyone official says now. You try to do everything right and it's still wrong. How do you negociate such misinformation without coming undone?

Feeling very Lost.

Coogybear said:

Won the battle, but not the war.

Court Adjourned.

Well done!

The council representative advised me I didn't need to go into court, as the council would seek a 'liability order' and suspend the proceedings. When I asked what a liability order was, I was told it meant that the court would uphold the fact that we owed money and we were liable. I insisted on speaking to a judge and he repeated the suspencion issue in court, but neglected to mention the liabilty order part. When I mentioned what he'd told me outside, the judge refused to uphold his liability order request, until my case was reviewed.

Well done for not going with the 'advice'. I would call it sheer cheek rather than advice.

So the judge made sure that justice was done? Good to hear that you can still get a fair hearing.

You still need to sort out and understand what you are liable to pay but the advocate should be able to help with that. :-)

Coogy - I really feel for you! 

You have been marvellous - give yourself  a few days just to put it to one side and get your energy back. This court 'mumbo jumbo' is so jargonish - but you gave it your best shot, so be proud!

Hopefully you will have your rep. on board very soon to off-load to and get clarity - PLEASE, just get some rest and things will feel less daunting. 

Mega husgs! X

Won the battle, but not the war.

Court Adjourned.

Completely wiped out. Was up till three this morning. Sick, tummy upset, shaking and stammering my way through the whole process. I'm not sure I can take much more.

The council representative advised me I didn't need to go into court, as the council would seek a 'liability order' and suspend the proceedings. When I asked what a liability order was, I was told it meant that the court would uphold the fact that we owed money and we were liable. I insisted on speaking to a judge and he repeated the suspencion issue in court, but neglected to mention the liabilty order part. When I mentioned what he'd told me outside, the judge refused to uphold his liability order request, until my case was reviewed.

Sad part is, I have to return and go through it all over again at a latter date.

Exhausted and very distressed by it all. I wish I understood it all better. Why is it all so complex? Never felt so alone and out of my depth.

Thanks for your advice folks.

Coogy xx

Don't panic, the court will not want you to get into any more trouble. They won't presume that the council is right and I expect that they will send you both away to talk and to sort it out.

Are you letting your husband help and contribute to sorting this out? Is his executive function ability better or worse than yours?

Thanks socks,

Feel sick today. A whole day wasted gathering paperwork and info to present at the court.

Son has been sick with a migraine also, so the constant to and fro has made for a fraught Sunday between myself and my husband, who has now gone into ostrich mode and dicided to walk the dog.

I believe we should be entitled to more support, (Perhaps that's why we are struggling,) but I cannot find out until the advocate meeting after the court hearing. My stammer has got to the point that I can hardly string a sentence together.

I will right down some pointers. I won't be able to get through it otherwise.

Hope i'm not fried by tomorrow.

Coogy

Coogy,

I will be thinking about you tomorrow and hope that it goes well.

What did you think of the idea of making a written submission to the court? I've used this technique when going to the GP and it can really help with laying out your case clearly. I should think that they will allow you to hand a written submission over at the start of the case. Ask the court officials if this is possible and how/when you should do it. I find, even with a list of prompts, that I go off at a tangent and almost always forget to make a vital point.

Hello Grannie Julie & welcome,

  The link You want is here. Hope that's helpful.

www.autism.org.uk/.../Autism-Alert-Cards.aspx

Coogybear

Can any one tel me how I can get the blue wallet please? I saw one with one and they said they bought it on the online shop. But I can't find it.

thanks.

Thanks YL, will do. Appreciate your input folks.

Truly.

Coogy.xx

I have got into a right old tizz with my tribunal so don't think it is just you Coogy- it is the feeling that you are not in control and going to a place (a 'court') we have never been to with strangers, is an overwhelming thing - I gravitate between ' I will show them who is boss!' then next minute am scared rigid to be honest! Sox's advice is brilliant and I will follow some of it myself wrt getting to the destination early, writing my 'speech' down and trying to get rest the night before so that I can think coherently. My case has been adjourned 'til May as my rep. couldn't make the first hearing so I am trying to push it to the back of my mind for now but I know you can't. Just do your best!

I think what the DWP are doing is a disgusting way to treat people - a dreadful system! 

Let us know how you get on. X

Thank you socks,

 These are really practical things I'd not considered. I'm always such a rabbit in the headlights when it involves myself. Fight for my kids rights and i'm on it all the way, fight for my own rights and I somehow become overwhelmed.

I hadn't considered asking for an adjournment. I've never used my difiiculties as an excuse before; preferring to hide my inadequacies, but I guess I really do have to face up to the reality that i'm struggling with an extremely complicated and ambiguous system. No one seems to value independance from benefits as an option. Give up work and all will be well, seems to be the advice.

Feel sick with worry, but have decided to write down some key pointers in case i freeze. The stress of it all is all too much, even hubby is lost.

I will let you know how it turns out. Hopefully we have a sympathetic judge who appreciates the failings of this government dept.

I'm not a lawyer and can only offer my ideas about what you could do.

Do you have a friend or relative that would be willing to go with you to court?

Yes, gather all of the paperwork and go to the court. Not turning up would probably be a bad move.

Get there early and ask for assistance from the court officials. Explain your disability and ask what they think you should do.

I would try and make a written account of the events that you could submit to the court. Include your attempt to go and talk to the council last week

Start the account with a statement about your autism, that you have a doctor's diagnosis and that you believe that you should be covered by the Equality Act.

Say that you do not wish to represent yourself but you have no alternative.

Apologise for the trouble caused but say that you are overwhelmed and confused by all of the paperwork and the complexity of the benefits system. Say that you honestly don't think you owe any money.

Say that you are willing to talk to a council representative who is able to explain what the problem is.

Ask the court to postpone or adjourn the case whilst you get some advice and/or talk to the council to resolve the problem.

I don't think that the court will want to spend its time on going through the paperwork. They will probably want you to go away and sort out the problem with the council.Be prepared and show willing however.

I don't think it is reasonable to expect you to sort all of this on the phone. I think it should be a "reasonable adjustment" to ask to be able to talk to an official in person at their offices.

Socks their is no legal aid for those on Carers allowance. A lawyer would cost £75 per hour here, just for advice; not representation and as my benefits are cut I have no money to spare.

My council offices are in the town hall and I visited in person yesterday (20 miles return journey) and was turned away. The lady said they only deal with phone calls. I tried to ring the council who avoided my questions and switched me to the wrong dept and then cut me off as no one was available to speak with me. Feel ignored.

I did contact my MP with regard to the issue and she wrote a letter, but then I was abandonded as parliment was disolved. She can no longer help me until her re-election.

Benefits is my real achillies heel. So complicated. My dyslexia doesn't help either. Yet i feel sure I don't owe the money they say because our income is not sufficient.

An advocate is calling me on tuesday to help, but obviously thats too late for court.

Guess I just have to gather my correspondance and go.