Where is this Governments Compassion?

[JoGey]

I find it unbelievable that David Cameron was the parent of a disabled child?? Where is the help, firstly my heart goes out to Riven and being the parent of a disabled 17 year old boy with Autism, I felt compounded to add my words of support. Yet still today this is what I found on the government web-site Direct.gov.uk, set up to help parents with caring costs of looking after severely disabled children, I quote... 'The Independent Living Fund (ILF) makes payments to disabled people to help them lead a more independent life. The ILF is no longer accepting any new applications.

Is it just that disabled people are the easiest targets in these difficult financial times, this is not acceptable.

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I have been fighting for direct payments since our core assessment in July 2010. The guidelines state 35 days from this date, it's now been more than 7 months. I wrote to our MP and in spite of one phone call telling me how appalled he was, no correspondence since. That from the council too, I have read receipts to me emails, so I know they got them. Clearly Mr Cameron's status afforded him different care in the system to us. Politicians don't live in the real world.

It's so true I have fought for 15 years since diagnosis at every milestone... school support, help with care etc and still battling on, it's soooooooo tiring, surely help should be automatic to those of us who have the most difficult job of all, so we can invest our time looking after and loving our special children.

MP's Don't get me started, maybe all the money that should be set aside for our children has gone to their second homes!!!!

Please read my story as to long to re write it's on the in the news under riven on BBC news page 2! I'd like to say I think your comment jogey about about unbelievable that David Cameron was a parent of a disabled child is 100% how I feel. You would of thought he would be more likely to understand the way a parent of a disabled child feels! We have so much emotionally to deal with without having to fight for support!

David Cameron will only ever understand half the battle. He will never understand the financial difficulties that those with disabilities and their families face because he's from a family of millionaires.

With his family money, DS1 would be at a nice, calm Montessori school, DS2 would be at an ABA school, we'd have a house close to those schools with enough room for the boys to co-exist without invading each other's dire need for their own space (plus a sensory room and a safespace) and we'd have staff to help deal with mornings and afternoons, either side of the school day. Our life isn't even that difficult right now, but with the right money, we'd be able to do far more than get by and firefight each situation as it arises.

Elle2211 keep trying don't give up, the battles I have had are numerous and heartbreaking. But my will to look after my son is greater than their bureaucracy (which probably costs more than giving us the money in the first place) ...laughable if it was't sooooo tragic. Stressedmum32 can you send me the link, as I can't find your article.

Thanks

DC lives in a different world it unbeleivable to think that he would understand, It makes it worse that he doesn't understand as it looked to some like he night and I can understand the confusion

I have just joined mumsnet, and have spoken to Riven on the telephone a couple of years ago ago so I know what she has had to face. DC and the government is a disgrace, they should be going after the tax dodgers not cutting services. I too have a severely disabled child, our local respite centre closed and is now been taken over for adults with LD. Now the County Council have realised that actually they need one so have had the plans all drawn up. But there isnt no money!!

please can we not make this all about being rich (or not!)

I posted on another thread yesterday to same similar.

money is nice. it helps with a lot of things. but it doesn't make anythign ok.

we have a reasonable amount of money (nowhere near DC standards though!). we have afforded most help tha tis needed for dd1, and we were able ot fund her temporarily at an ABA school.

but we remain stressed, ragged, without a life, and with our marriage crumbling.

because just having money does not mean you can find "staff" to help. nor does it take the stress away (yes, I know it take ssome of it away)

we still face not being taken seriously over health concenrs, we still have battles to find respite (I don't mean a state funded place, btw, but private respite is hard ot find too), there are still no SN groups or services, and no sibling groups for dd2. our quality of life still suffers overall.

sure, our private life is comfortable.

but being miserable in comfort is not much more fun than being miserable and poor (and I have done both)

I don't think this is about being rich or poor, but surely it is being made a money issue by our current mismatch of a government, not us as carers. I sympathise and know how difficult it is for all, irrespective of financial status, nonetheless this does not make it acceptable for Riven to be offered 6 hours help per week, it is a disgrace. I don't wish to move to trivialise this by making it a money issue, it is the provisions required by carers to keep them sane is what is required. Believe you me if these children are taken into full time care it will cost them a lot more and leave parents burdened with guilt.

silverfrog I have seen the effect on treatment in NHS building of people in expensive clothes, the illusion it created meant the treatment was given in a different way -unbelievable but true

ivykaty, I do not dispute that, and agree it is wrong.

same for sounding more educated - it often works for you when it shouldn't.

but, it really doesn't make life any easier.
I still had no access to toddler groups with dd2, for eg, and no groups for dd1 either.

I still have so-called friends who just dropped away because they cannot face the horror of my life, or the embarrassment of dealing with the fact that dd1 is not NT.

I am still isolated, and dh & I are still unable ot find qualifed carers to help with dd1, no matter that we are able ot pay them.

No, money doesn't take all of the stress away, but when you have it in spades you are so much less likely to spend your life having to beg for everything little thing you and your children actually need.

I am fortunate that we are financially solvent. We could afford to buy our own Major for DS2 instead of waiting for months for it. We can afford to replace all the stuff that the boys trash. We own our house and can afford to keep it warm for the benefit of the boy who tends to strip off. We don't have to worry about where the money is coming from on top of the day to day stress of caring for 2 boys with lots of needs.

The boys are in a mainstream school with a good ethos that tries hard for them. It's not perfect, though and DS1 is constantly stressed and has violent rages as a result. I have to pick up the pieces every day.

DS2 is non verbal and has seen a SALT twice since he started reception because his NHS SALT retired and wasn't replaced. They have no input from the ASD advisory team and no training. He is being babysat, effectively, by the devoted 1:1 he is lucky enough to have. He loves his 1:1 and is keen to go to school to be with her, but comes home withdrawn and hits me if i try to play with him. Being in a room with 50 other kids is just plain stressful for him.

DS1 went on the rampage, last week (and has daily, since) and we finally have a meeting with the ASD advisor about him. This meeting was supposed to happen in September. The ASD advisor he used to have left the service in the Summer and wasn't replaced.

The boys can't stand to be in the same room as each other and i really struggle to keep them both entertained and keep them from fighting in the school holidays. We are effectively housebound much of the time. I can't put them in separate rooms because we don't have separate rooms for them and there is only one me to watch them.

I'm afraid that, with a large pot of money of my own, a lot of these problems wouldn't have to be such a big problem. The money wouldn't guarantee happiness, but it would give us a lot more flexibility.

ourvye,

I do agree with what you are saying.

I jsut don't like the reasoning that it is (well, was I suppose) all ok for DC because he has money. money helps with an awful lot (as i mentioned earlier) but it doesn't help with the most crucial htings, ime.

I am very lucky as my sister helps me with caring for my son, she gets circa 50 pounds a week for 37.5 hours, it is a good for us that she is charitable!!!!

I agree that it is not about being rich or poor - a lot of us fit in the middle! But it is about money - and access to it. DC is like many working parents, he probably doesn't worry about every little detail - only the general picture. He didn't know how many nappies his son got through a day. Just like my DH couldn't tell you how many times our DS need changing in a day - he doesn't do it. He dips his hand into his pocket and pays for them.
I don't think anyone is belittling what an impact their son had on the family, but access to money to provide solutions to one or two issues does make a difference. I would hate for my life to revolve around 'if i buy all the required nappies i can't buy x' . I would love a night off, and i knew that if i was really desperate, i could pay someone. That should be an option available to those that require it regardless of financial background.

SF you know where I am on FB if you ever want a chat, and you are quite right: money has a practical effect but is not all of the picture at all.

We've been OK off and now we are not (temporarily). the general cash stress doesn;t help but voerall-

JoGey do eb aware that the rules on that sort of thinga re changing; is she's not self employed they will find her and if she is by 2013 she will have to make minimum wage.

'
The boys can't stand to be in the same room as each other and i really struggle to keep them both entertained and keep them from fighting in the school holidays. We are effectively housebound much of the time. I can't put them in separate rooms because we don't have separate rooms for them and there is only one me to watch them.

'

Same ehre, hard isn't it?
DS1 hates them all, except sometimes the toddler. Well he cant do people really so no surprise. DS3 now sleeps in the dining room, he wasn't safe upstairs, and we can hardly put ds1 in with ds2 either as ds2 needs a break from asd (he was with ds3 but didn;t cope tehre either)

The dining room was meant to accomodate ds4 who now will have no room for presumably as long as this lease lasts.

DS1 knows ds3 can;t articulate his fears well so was able to torture ds3 for some time before we found out, ds2 is scared of ds1 as well so wouldn't intervene. Indeed, when ds1's voice hits a certain stim I have a pnic attack automatically as I know where it leads.

No money could stop ds1's behaviour, but some more space would be nice, or even a home that was ours long enough to put locks in- but we don;t want the council housing SSD wanted as we feel we would be sort of accepting this rough time as permanent if that makes sense? (probably not)

thanks, Peachy we muddle through . same here if you ever need to sound off though.

BUMP

Hi,I am a mum and carer of a severely disabled daughter who has recently developed epilepsy, and the past few months have seen me near breaking point. I do feel that our disabled children have become the villains of the peace - despite never doing anyone any harm. What I mean is they are directly suffering the consequences of the banking crisis and the government bailout, without which there would not be all this government spending cuts. I would really LOVE to start a pressure group, and embarrass some of these bankers, whose recklessness is the main cause of all this, to start making charitable donations to families where their contributions would make a HUGE difference!!! Don't rely on the government to tax their multi million pound bonuses, rather try and embarrass them into making contributions to all the people who are so badly affected by their original actions, for which they do not seem to have to suffer any consequences - instead it is families of severely disabled children who are doing everything they can to cope and to care who are suffering the most as a direct result of the governments bailout of the banks!

Having worked as a lawyer in the past in medical cases there has always been a massive shortfall. Cases of cp which could be proved to be due to negligence at birth won care packages of 24 hour care where a team of carers would be employed. It wasn't perfect we never won enough money to combat the fact that care costs went up more than inflation but we did our best and those children got good private schools, ot, physio, adapted housing. Often parents continued as main carers but got their time paid for. Then there were the cases we lost where the parents were left desperate and with inadequate help. Its nothing new. It might be getting worse but no council can excuse leaving a family in this situation with 6 hours a week respite. I know families who get much more than this who have much less need. Unfortunately no government cares enough as we are a minority we will not make a difference on voting day. Of course this is the first government to stop legal aid for children damaged at birth by negligence which wiill save the nhs having to pay out as much. riven's council have a legal duty to assess need and cannot have assessed need as 6 hours a week. What they have done is as we all know councils do when faced with a disabled child decided what they want to spend and fix the evidence accordingly. But the public are to blame too when councils cut things for the vulnerable even when there is a statutory duty to provide it there is no outcry. If Rivens council turned round and gave her a proper package but closed the local swimming pool which is discretionary which cause do you think would be forgotten in a few days and which one would have people on the streets with placards.

Hiya folks :)
I am new to mumsnet, guessing like many other parent carers, I heard the news today about Riven and her family. I had not heard of mumsnet before so thank you for that Riven. Mostly though I'd like to say I am so sorry that you and your family are having to be pushed to this length. I wish you all the luck in the world and hope you can find the help you need to carry on doing what is best for you and yours. If there is anything I can do to help, both your family and this horrible situation that you have highlighted for many of us, please let me know. After hearing the news tonight where it's been said David Cameron cannot personally intervene, perhaps we as parents of disabled children could write to him. Maybe thousand of letters all asking for the same thing would make it feel more personal for him. Just an idea, are there other ideas floating around? Not sure i can just sit here and watch.

:(

Hi, I am new to mumset, my heart goes out Riven, I have a disabled child and like many of the members on mumset I know what she is going through. I only hope the government take notice about the impact they are having on peoples lives with their cuts and budget.