I worked for families with children with CP injured at birth doing negligence actions for years and I can assure you the problems Riven etc face have always been around. There has always been a massive shortfall in provision. I don't doubt it is getting worse but its always been appalling.
I met some amazing families (never expecting at that point to have a disabled child myself) who just never got a break. They were all devoted to their children but often at breaking point. It was always so unfair that when you could prove medical negligence at birth the child got round the clock care for life and where you couldn't the child was left with substandard provision,
The question in my mind is how if a child has CP due to negligence and goes to court and wins a Judge will decide that the needs of that child are round the clock team of carers, an adapted house, regular OT, physio etc, equipment, loss of earnings that the child would have earned if not damaged at birth etc etc - multi million £ claims; yet a Council assessing a child with the same circumstances decides 6 hours a week respite meets need. Some of my clients with CP as adults were able to move into their own home with a team of carers. How can a Council possibly have decided 6 hours was enough?
There probably needs to be some national guidance on what is reasonable - I guess Cameron is thinking this way with their love of vouchers eg some kind of tariff where you get a minimum of X if you have a certain level of disability. which of course raises its own problems . But I guess there needs to be some kind of minimum starting point that a child with that level of need should be having carers sleep in regularly to give the parents a break. Riven could put her child in a residential placement and some of my clients did that - but they also had the choice of saying to the court give us the money and we will make our own arrangements - and thats what Riven is saying in my mind this is what it actually costs - several £1000 a week - give me some of that money and I will do it myself for less money but not be pushed to the limit.
I don't think any govt will ever see us as a group whose votes will make a difference.
But I think you can't let the Council off the hook here no right minded person could think a child with this level of needs only requires 6 hours a week. Most elderly people who get meals on wheels get more than that - but then the elderly vote is more important.
I hope some nice pro bono lawyer pops up and helps Riven there must be a legal way of challenging such a crass decision. The assessment has to be made on need not on resources and I don't think there is a person in the country who thinks 6 hours was a reasonable assessment of need.
What we need is a nice pool of lawyers who will act for free and take these councils to task.
We also need some sanctions so when councils break the law and under assess to save money they are fined and there is some disincentive to doing it again. At the moment the whole system of SS and Education is based on giving the minimum and seeing if the parents challenge it - waiting for children to fail or parents to break down before they drip in a bit extra.
I think there is a real problem with councils making these decisions without some sort of national criteria - many councils seem to have a culture of denying provision whenever they can, knowing even if they caught out there is no penalty to having delayed. They are still quids in even if they have acted appallingly.
Its a great shame its so hard to sue councils for negligence - whatever people think about negligence lawyers there is no question that hospital care got a lot better once the NHS had to pay out for gross mistakes. Doctors did not improve standards of their own accord they did it because they were frightened of being sued. Councils will only change when they are forced to or fined for getting it wrong.
There is money there - Councils just choose to spend it on things which are popular rather than those which they are obliged to provide. Councils have been told to publish a list of what they spend which costs over £500 - I am sure we will see that whilst they can't apparently afford respite they can afford hanging baskets and flower beds, first class rail travel, swimming pools, firework displays etc. If there is genuinely not enough money they should limit spending on things they have a legal duty to provide not on things which are discretionary but vote winners.
Its not just Councils of course there was a recent report which showed childrens services were a cinderella service in the NHS eg its easier to get speech therapy and physio if you have a stroke in your 70's than it is if you are a 2 year old disabled child. Disabled children don't have a voice or a vote. Thats the main problem.