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Here are some suggested organisations that offer expert advice on special needs.

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.

63 replies

gotchababe · 21/01/2011 12:12

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'

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boobaby · 21/01/2011 19:52

you can take on your local authority.you need to be specific about your needs,have patience and follow the complaints procedure. If after stage 2 of the complaint you have not got what you want then contact the Ombudsman.They should investigate on your behalf.At the same time find a good solicitor, who specialices in disability rights. It can be exhausting and emotionally draining but at the same time,it's great because your having a go.

donkeyderby · 21/01/2011 20:07

Access to the Law could be really useful. I had a discussion about childcare recently - Council's have a statutory duty to provide sufficient childcare for all children including disabled children. They are clearly not doing this but there is a sort of disclaimer along similar lines to the DDA of 'where possible' tacked onto the end. However, the inequity of childcare provision for disabled children compared to mainstream kids is startling, especially those with severe disabilities. We need a lawyer and someone willing to take their council to court, anyone?!

Combining disability with race and sex in one Equalities body has been bad for disability. Seems a toothless organisation. I would love to see lawyers taking more Local Authorities to court in test cases, and access to disability lawyers for carers everywhere. Mind you, this Government would just change the law to wriggle out

donkeyderby · 21/01/2011 20:09

sorry, don't think council's have to 'provide' childcare, just ensure it exists

Tricia7212 · 21/01/2011 20:17

09 February 2010

All local authorities will be required to provide short breaks for parents and carers who look after a disabled child, under plans announced today by Ed Balls and Diana Johnson.

www.dcsf.gov.uk/pns/DisplayPN.cgi?pn_id=2010_0033

So why aren't they?????

GentleOtter · 21/01/2011 20:26

Some local authority councils are corrupt.

Our one is.

sanitywouldbenice · 21/01/2011 20:36

why should i have to find a good solicitor boobaby ? why are they not accountable for themselves and do what they should be doing ? i have a broken leg, a severely disabled child to look after and no income from me or hubby - we are not on the breadline but quite frankly i dont have the time, money or energy to keep having to tell people how they should be doing their job - it shouldn't be down to me and my money to make them do what they should be doing. Sorry, this is not personal - just having a bad life.

gotchababe · 21/01/2011 21:44

We have no power because we carers have always just accepted the unaccepatable. A resource website would be a start for information sharing. Local Authorities have to be just seen as providing a service, not necessarily the right service. As said in an earlier post who oversees and Audits these Authorities and see's where the money provided is going. I am under no illusion what is allocated for specific areas will not be used there. I had a 2 year fight for Direct PAYMENT another area not identified to carers clearly. This is for just 4 hous a week. My god where does it end, it doesnt.

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shell1976 · 21/01/2011 21:47

My hubby and i have four kids 1 of which is severely disabled much like riven i feel saddened that she has come to the end of her tether and angry that not much is being done for her and her lovely children.My hubby said yesturday that he will take us to london and camp out by number 10 but he said "there are two birds to kill here 1 is for the plight of carers and the other is for rising fuel costs he suggests that we all go in convoy stuff up the motorways etc and get our point across or try to anyway

gotchababe · 21/01/2011 21:49

shell1976

You said it, my sentiments entirely.

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Tricia7212 · 21/01/2011 22:02

I'm in Shell. For both reasons Grin

shell1976 · 21/01/2011 22:02

My hubby said if any 1 is interested in doing that then let us know. He is off to our daughters school on Monday to enlist the help of other parents and im sure he will get it.

WetAugust · 21/01/2011 22:23

If you are thinking of camping outside Downing St you'll be wasting your time.

If you want to camp out anywhere to draw attention to a specific case then camp out (or even better stage a sit-in) at your Local Authority offices.

The law is there for you to use. You don't need to be a solicitor - just research and understand your Council's statutory obligations to you and make your case and put it to them.

If they fail to act reasonably then report them to the Local Governemnt Ombudsman.

You don't need a solicitor for that. You just raise raise a Formal Complaint through the Council's complaints procedure and, having exhausted all 3 stages of the process, you can tkae your case to the LGO.

I did this without a solicitor and won my case.

I'm not saying it's easy - hours / days of research are needed and a considerable amount of time spent developing your arguments for the LGO to consider.

In my LA they are now building autistic bases - Why? Because - and I quote the Minutes of their education services meetings - it's cheaper than having to fund expensive independant provision for the increasing numbers of children whose parents are taking the Council to Tribunal to secure an appropraite placement for their child.

That's grass roots politics producing a meaningful and achievable outcome.

We should do the same for carers. Apply for a statutory assessment of the Child's needs under the existing provision of the Children's Act and request a similar assessment of the carer's own needs.

Disgree strongly with the very weak identification of needs report they produce. Raise formal complaints and take each case forward. They'll soon get the message - that it costs less to address needs up front than to get tied up in paperwork / legal process to deny care.

That's how I woudl tackle the issue.

But if you think camping out in Downing St is the way forward - whatever.

donkeyderby · 21/01/2011 22:50

Many parents do not have the time or energy for the number of complaints they would need to pursue to achieve any sort of equality. Discrimination does not usually rest in one area of local government. I have been told that a quick letter to the local press gets straight to the powers that be in the council. Why not attack on as many fronts as possible but recognise that some carers are too exhausted to get engaged in a prolonged complaints or legal process. Someone really needs to be fighting our corner.

WetAugust · 21/01/2011 23:06

The Press is a very good idea -if you're brave enough. I wasn't.

I agree, most parents don't have the time to persue the Councils in the way they should - but until they do they will continue to suffer in silence.

There are charities, legal centres, on-line help etc which can help.

I'm a single parent. Surely one of the parents could find enough time to do this or perhaps we could help each other?

That's how you get things changed.

GentleOtter · 21/01/2011 23:51

WetAugust- it takes an awful lot out of people to fight the Council. I know as I have gone through a similar process to you and there is little to no help while you are in the lengthy process of fighting them.

Carers are very angry and feel used and abused by a system which they pay for yet has failed them and the people they care for.

In my own experience, the council lied repeatedly and changed 'rules' but they were hoist by their own petard.
The whole fight took the very last vestiges of energy from me and I eventually cracked.

It is not an easy fight when your opponents are eels.

WetAugust · 21/01/2011 23:56

You don't need to tell me how hard it is GentleOtter. I was working on DS's case until 2-3am every morning and then getting up for work at 7am.

Eventually the stress of it all caused me to be signed off work for 2 months and I lost stones in weight.

But through sheer grit and determination I got what he needed.

Of course Councils lie - but if you let them away with it they'll keep doing it. A censure from the LGo is a (very slight) blot on their copybooks but it forces them to deliver.

gotchababe · 22/01/2011 11:22

You know it is pretty evident that these posts are consistant with the fact that all, us parents/carers have numerous battles and contraindications to endure pertaining to our own unique circumstances. All children are precious, ours are special. What are we all going to do? We are supposed to be a Democratic Society? Society is failing in so many ways. It is FAILING OUR DC. What and who will protect them when we are not here for their 24/7 Care and Supports.

Can someone tell me please, because I do not know.Sad

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ReclaimingMyInnerPeachy · 22/01/2011 11:25

I'm happy to help with any petition.

I am setting up soon as a carer supporter for ASD kids (am nta dvertising BTW- not yet taking clients) and it's a real area of need but do i feel like a shite that I can no longer find state work and have to go private annd charge? Abso bloody lutely. It's so very wrong.

GentleOtter · 22/01/2011 16:23

Have The Princess Royal Trust for Carers been mentioned?

I have added the link as it may be of use.

gotchababe · 22/01/2011 17:18

Thank you GentleOtter, will source this.

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gotchababe · 23/01/2011 14:08

Hi ALL,

So everyone how are you all? Has the initial hype of the past few days all drifted away. Or are we all going to make some difference here for our disabled children. If we need to March down Downing Street to be heard we should. No one closer to home in our LA'S listens. So the top of the chain we must go. Lets face it David Cameron, whom sadly lost his DS, has same emotions and feelings as us. But he was in a better place financially. How many of us can say that. Money will not help our kids, but it would ease the burdens and pressures we face daily. We want the correct resources. We want the constant battles we face ceased. We want an acceptable and justifiable Quality of Life for our DC. We want society to recognise our children and accept they have Human Rights that should be adhered to effectively and without all the beauracratic nonsense.

It is their right!

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ReclaimingMyInnerPeachy · 23/01/2011 15:45

How the heck are those of us caring for a disabled child, maybe even more than one (as in my case)- or indeed a disabled adult supposed to amrch down anywhere? Maybe if I could afford the fare (nope) and the kids didn't have ASD and be likely to bolt but-

and that's where the Government know carer's campaigns fall down: we're too busy caring.

Giggleswick · 23/01/2011 15:47

Definitely yes - we must act ASAP.

I have also experienced a similar 8 year tooth and nail battle with local authorities for medical and educational support for my daughter, who suffered a life threatening stroke at age eight. My daughter is now hemiplegic and facing a further brain op for intractable epilepsy/ migraine, while struggling to attend school to attempt GCSEs. Her disability could have been avoided if the Drs treating her had known that kids can have stroke, too! As could my nervous breakdown earlier this year - they gave us a social worker then, because I was too ill to care for her - but promptly made the poor lady redundant after one meeting, so then we had to rely on friends for respite care!

My opinion is that we should all get together and support 'Disability Matters' in tackling the Government and the local authorities. At present, because families are forced to resort to a multiplicity of charities for help the government is operating a divide and rule policy and ignoring everyone.

gotchababe · 23/01/2011 16:01

Absolutely Giggleswick,

My son Hemiplegic and has had a Hemisperectomy of the r/h side of his brain for Intractable Epilpsy. Did not work. Health at moment very poor. On the spectrum for everything.

ReclaimingMyInnerPeachy no one said it would be easy, what we do every day far from easy. We are all busy caring and supporting and fighting, being our DC VOICE. We find the time, we find the strength. We have to. Or we are just victims of our circumstances'

I for one do not want to be that victim any more!!

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gotchababe · 23/01/2011 16:07

SHOULD HAVE BEEN HEMISPHERECTOMY. The clinicians knew nothing, kept being patronising. I was a strange parent, over protective, you know what we all go through concerning our DC. Specialism and Expertise in most fields, non-existant. All these posts are conjusive of the trials and tribulations we all face every 24/7 of every day.

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