Should all us Exhausted and taken for granted Carers of Disabled Special Needs Children finally challenge this Governemnt with a signed Petition for more Help and Resource.

[gotchababe]

I have read so much the past 24 hours on the trials and tribulations of us over worked, exhausted and underpaid carers. We love our children unconditionally and deliver the 24/7 support and care they so require. We are human and not robots. We are sleep deprived and emotionally drained, if we are seen to be coping, we are left. We have constant battles with Medical, Education, Social Inclusion, the list goes on and on. All the policies are there in theory, in practise they are not. I would urge parents/parent like myself to make their voice heard. We are our childrens voice! It starts with the very top ie the Government, they have to take responsibility for the correct implementation of Specialised Services. They promote 'The child comes First'

Yes defanatly!

go for it, it may help.

Definately

ABSOLUTELY!!! I tried 10 years ago and didn't really make it further than local papers but it is a bugbear of mine. I work in Adult Social Care now and I still fight the carers corner where I can because I have never forgotten how I felt as one.

The government are dependent on emotional blackmail. They know that parents will (mostly) want to love and care for their child unconditionally. But if every Mum and carer said they couldn't cope, it would bring the whole system crashing down and care costs shooting through the roof.

I lost my career and ultimately my marriage because of the stress I was put under. I've rebuilt my life now but its been a long hard slog.

And even if you don't have or know a SN family, Riven has given the gift of insight and reality.

Please don't think "this doesn't affect me"... one day it just might.

Lots of love to ALL Mums/Carers x

We need to do something. I have a 17 year old son with cerebral palsy and lived in the US for 5 years. I returned in April 2010 and cannot believe in the amount of cutbacks and the way the most vunerable have been affected. Sadly Mr Cameron's son died at a young age, and he will never know how much harder it gets as your child gets older and how as they grow into adulthood, their world and your world gets smaller. Many of us still have other children to bring up and respite care is for the benefit of the whole family. My friends who have children of a similar age have a freedom I will never have, but as I love my son unconditionally I couldn't imagine my life without him. One mom that I recently met up with told me all she gets for her 24 year old son is 2 days a week daycare. I have always maintained that it is not my son that is the problem, it is all the bureaucracy that we are constantly at loggerheads with.

Pottydotty and to all concerned in our situation.

It is the constant bureaucracy and ignorance to our needs that is the problem. Not our kids. The story of the mum the other day has just lifted the lid on this area and the harsh reality of the job we carers do. This should be given the utmost, specific, immediate attention. No one locally listens to you. We are over protective parents/mothers, we are taken for granted. I have been called all sorts, with individuals, Medical and Educational. They who shout loudest, never a truer word, why is it like this though. Not everyone has the strength or stamina to fight for their rights, or do not know whom to approach? This is no reflection on them. They need to latch on to us strong parents for guidance. It is just these bereaucrats think they know it all about your child, and they make decisions that has no reflection on their specific needs. The child most times is just to fit in. I am not having their uncompassionate ignorance for my son. He is complex, Intractable epilepsy which he had extensive brain surgery for. We as our Childrens Carers' need to heard! We have had enough!!

Here here enough is enough.They really do have to start listening.

Yes. Then we all need to march on Downing street with kids in tow and tell DC we are leaving them lthere for him to cope with, till he gets his arse in gear

A petition is utterly pointless.

The real problem is that much of the assistance we need is not in the gift of Governments, who passed responsibility for Social Care and Education many years ago.

As a result you have a post code lottery for social care and education dependant on how generous or otherwise your Local Authority is.

Care packages idebtified and funded by one local authority (unlike Statements) do not have to be homoured by another local authority should you move.

There is no appeals route for inadequate social care. the Local Authority identify the needs, decide how much support is required and fund those needs. It's obvious that they try not to identify needs that are expensive.

It's exactly the same for people dealing with social care for elderly relatives where Councils ignore their responsibility to fund care home placements and for parents whose children are subject to forced adoption, where the Local Council is judge, jury and executioner in decising that a child is 'at risk'. The Local Authority is virtually unchallangeable by the average parent, Local Authorities do not act transparebntly and there is little recourse.

As I've siad on here many times before to parents who say "I'm going to complain to my MP about education / social care" - "Don't bother", for the reality is that that the MP can do nothing. It's the Council that make the decisions, so the only person you can complain to is your own elected Local Councillor

That's what any petition should focus on - national standardisation and portability of care packages enshrined in statute that Councils cannot wriggle out of and with a dispute resolution service to force Councils to meet the needs.

There was a very interesting piece in the Telegraph this morning stating excatly this:

www.telegraph.co.uk/health/8272731/I-understand-Riven-Vincents-desperation.html

Absolutely Tricia 7212.

Could we get enough parents together and willing for this? He would have to listen then, would'nt he.

He would have to listen then, would'nt he.

No he wouldn't.

Surely its worth a try.

So this petition - what specifically do you want?

WetAugust!

Everything can be challenged and it is exactly those sentiments that gets little done. You have have to challenge, you have to make yourself heard. Everyone an individual and you are entitled to your opinion. Local Authorities do make decisions, but they are mainly the wrong ones for carers all over the scope, for Disability. Everything starts from the top, they provide the budgets for local authorities. More Specialism and understanding in care packages are needed. Training all over is needed. Not, as I have said before individuals sitting in jobs delegating and making wrong decisions. Who Audits these services? Who oversees that they are implemented correctly and cost effective. Who oversees that the disabled and vulnerable are being catered for corectly, and given the right supports. Economics are a massive factor. So we have to fight continuously to no avail. Now we have to be heard. Thanks

I just commented on that piece. But I agree with your statement about get hold of your local Councillor....I did and that got things moving for me. It did help though that he just happend to be on the scrutinising committee of my local social services, plus he has a brother who is disabled so he really understood the pressures on us as a family.

Why should we have to put up with the unreasonable in our tragic circumstances. We never asked for a disabled child, but every child is precious and entitled to the best 'quality of life' possible. The recent mum who made the statement and was in the media other day has opened this up nationally for Carers of young and old. We all have done our bit locally and probably not got very far with matters and issues pertaining to our Disabled Child. It needs to be national now and more parents need to come forward. No use putting up with a situation, someone needs to act......Why are any petitions or visits to Downing Street started. To put pressure on the Standing Government and for the Individual to be heard and recognised for all sorts of matters. We are unsung heroes, we save the Governement Millions if not billions. Who looks after us the parents?

I think we should make as much noise as possible, petitions and marches. As a result of poor Riven, the media are finally taking an interest and the rest of the population have an indication of how difficult this is. Having a sick /disabled/ special needs child is exhausting, physically and mentally without the constant battles with health authorities, local authorities, schools etc. We have to educate everybody just how difficult it is. I think the concensus out there is that if a child needs help they get it, not that the parents face long and arduous battles in attempt to secure this for them.

I'm in!

What I'm trying to explain is...

you wouldn't march on Downing St because your bins weren't being emptied. No - you woudln't because they are under Council control.

Just like social care.

Even if the Govt gave the Local Authorities squillions more money the Coucnils would just find something else to spend it on instead.

Did I tell you that our Council employed a Dormouse Officer? I kid you not

P.S. Not all councillors will be on your side. I contacted mine in the area we lived before. He was useless. The school told him a pack of lies and he merely wrote to me saying my daughter had no issues and perhaps it was my anxieties causing her difficulties!

newlife4us.. my local councillor phoned me up the night I emailed him. He came out to see me the next day. He met my son that day, he saw the mess I was in and trying to hide...you know brave face and all that.

Maybe your old local councillor just couldn't be bothered.

But as I said mine has a brother who is disabled and therefore understood so much more. He is also a member of a party that I had never voted for....but I will be voting for them now...

have to agree with WetAugust really don't see the point as it doesn't get anywhere - from my experience councils are accountable to no-one and hence get away with whatever they like. We are not in a democratic society its a society where you either need to know people or have enough money to pay for what you need. The outcome of all this hype this week has not been determined at all - all it shows is that people in some areas are not getting what they are entitled to and need so i don't see how a petition will help - sorry.

Totally agree sanity

Only those who constantly fight the Council get anywhwere. To do that you need

1. time,

2. energy

3. money to commsission private reports to support your case

4. a good understanding of the law and the Council's stutory obligations

5. perseverance

Not many carers have all (if any of the above).

Charities have been trying to do it for years - and we're still in the mess we're in.

We have no power - so we can be ignored.

Reality.

I agree with Wet - I am wary of campaigning for councils to get more central govt money as I see no evidence that it would be spent on SN respite or education. Here in Scotland, we have specific evidence of councils choosing to spend money given to them for SN children on other issues dearer to their hearts.

I had a battle last year with the Local Authority to get DS (Aspergers) into a special unit as he wasn't coping at MS primary. I spent SO many hours drafting letter after letter arguing our case - finally resulting in a threat of legal action(which worked). I think it would be useful to find a way of sharing resources (website?) with other parents who could cut and paste paperwork for their own use. I would have found that v helpful. Life's hard enough without having to battle for what your SN child needs.

I just looked to see if I could find expenditlure of my local council...as of yet I haven't...but have any of you heard of Michael Charles from Sinclairslaw?