RE: Cuts in community care and respite

[petty]

You may have seen certain parts of the forum that I have mentioned about an 80% cut in my autistic daughters care package. The cut started from June 2011 and the council refused to pay for the 20% until end of June this year, so it's been 100%. They have only released a quarter of the money for the 20%, in the hope my daughter will refuse to leave the house, (she's become reclusive over the big cut), and they will want that money back if she doesn't use it. They have allocated that I should get only 14 days per year respite, but they have refused to pay for this as well.

I have written many letters appealing to them, to be ignored, I have had to ask the social worker many times to provide me with copies of my daughter's and mine assessments, to find that they have written contradicting evidence of untruths in them.

In June this year I have had a visit from the disability law service and at this moment a letter has been sent to the council, giving them 14 days to reinstate my daughters service or they will get a quashing order for a judicial review at a high court.

If my friends want me to write on this forum about the outcome and when and what's happening about this case, I will be pleased to do so, in the event that no-one else suffers such a drastic cut without an explanation as to why.

If the moderators of carers UK wish to use this for any campaign, email me a name and address and I will send a dvd with all the information sent to the disability law service and the personal information about my daughter and me.

[Parsifal]

I will be very interested to hear the outcome, the more decisions to cut services which are quashed through judicial review the better, not only for the individuals concerned but they build up a body of case law, well done for getting this far and good luck.

[charles47]

Hi Petty - hope it all goes well for you. I think this is one that's more for the admin team - the mods only volunteer on the forum, not on the helpline - but this could be really useful for the helpline and for the campaign materials that the CUK team put out to local groups and carers.

I'll flag this up for Matt.

[petty]

That's okay Charles, they have been given a date of the 14 August, I will be very surprised after a year of ignorance whether they will be able to satisfy an outcome in a short time. If Matt wants to get in touch I will give him a dvd of all the correspondence and emails sent to solicitor, social services, advocates and myself, in word and pdf formats. If this can be used to deliver a message, that if councils want to make cuts make sure its legal first.

[petty]

14th August was the deadline date, solicitor has not heard from social services, which is not unusual for them. Will let everyone know what steps he will be taking now.

[Melly1]

Hi Petty,

Please keep us updated with what happens. I hope for you and your daughter's sake you get the respite re-instated.Fighting on top of caring is just so exhausting, but all you can do is keep at it ...

S had to have a solicitor last year to get anywhere with social services over funding for college ... the only time the manager answered my correspondence was when she was instructed to by a solicitor. The state of play is appalling. They waste so much time and money trying to wriggle out of their obligations to those with a genuine need. I'm trying to get S some support at the moment - round and round in circles we go.

Melly1

[petty]

I will never have trust in social services who supposed to be helping disabled, sick and elderly, whereas the carer only comes in last. But in this situation there's never been any explanation has to why such a cut in my daughter's service, and why say I am to have 14 days a year respite and not pay for it, to be told that they are looking to find the cheapest place than their own council respite.

They are happy to waste money and save their own jobs, it's 14 months now, anyone who has autism knows that they can get controlling when stuck at home 24/7, they go on and on about the same thing without understanding the words later and no. On top of that I have an aunt who is at the early stages of Alzheimer’s and she's decided to visit every Monday, get me up early in the morning from the couch after being up all night, sit for 3 hours, have one cup of tea, and go on repeating herself about the same thing.

I am now swollen in the stomach, lost of apetite, pool of acid in my throat and living on indigestion pills, when they have a go at me my stomach turns over, I am unwell, with no light at the end of my tunnel, I do hope this matter really doesn't take too long.

[petty]

Update so far:

The Council are accusing me of refusing support as little as it may be, even though I wrote on 3 occasions accepting the cut on a basis of appeal, to which to date have been ignored.

They have also said:

"To revert to an old care package based on current needs would be unlawful. It has also been explained to your client that this would not be possible as any assessment of needs needed to now be done through the RAS (resource allocation system), framework which was put in place by the Council in 2011. You should be aware that RAS is an assessment tool approved by the Department of Health."

I was not asking for a same care package, I was asking for the level of service to be re-instated. The solicitor is now in the process of asking them on what amount of care can my daughter receive on a cut of over £1,200.00 per week.

Will keep you informed when the next step turns up, if they feel my daughter has improved, I need to know on what areas she has improved to justify the amount of cuts she has endured.

Bye for now.

[Lazydaisy]

Good luck. What a lot of stress for you.x

[poppett]

Good luck and keep on fighting.

I know from experience taking on big brother is like scaling everest on rollerskates, but we owe it to our caree to be their rottweiller.xx

[bowlingbun]

Good luck, I'm having a battle too at the moment, I know just how difficult it is to juggle both fighting for your rights and caring as well. Keep us posted.

[petty]

Sorry friends, still fighting, so far the excuse is that they are using a new assessment tool called a resource allocation system (RAS), which social services say whatever that tool generates they can cut services by more than half. The previous service my daughter had was £2,305.04 per week, it is now by this new tool £972.00 per week. A big cut per week, which is only offering a few hours per week because she needs 2:1 support.

My daughter, has autism, only her autism gives her challenging behaviour, the last 2 services she had since leaving school have turned out to be businesses not services. They have made themselves rich and left my daughter in a reclusive state. The last services also found it difficult to employ staff on the cheap to care and support my daughter, so they caged her in a minibus for 8 hours a day in a supermarket car park, with £35.00 per week to spend on a sandwich, drink and yogurt, she started to refuse to leave the house, so I got rid of them. I have found a decent service with autism credability, however social services want them to cut from a 2:1 support to a 1:1.

I have a letter from the Waltham Forest Adult respite unit stating that they could not suitably nor safely meet my daughter's respite care needs. So now I have two lovely solicitors from the disability law service, advocate for my daughter, advocate for myself and a good friend with autism knowledge who is helping me fight this battle.

No barrister yet, but it is looking like a long fight ahead, will keep you all posted.

[charles47]

The RAS may be less "generous" a system but still has to meet the needs of the individual, and unless her needs have changed they cannot cut the package. Otherwise it is simply a cost cutting exercise which legally social care services can't do.

No wonder you need the legal support.

[bowlingbun]

You are doing all the right things, it's such a shame that it's all ended up as a battle when you already have more than enough to deal with anyhow.

[petty]

Update so far:

6th November had another review by social services, and also the health services. They are hoping that the health service can joint fund to increase the money to buy more time for my daughter's community care. This idea has come from a social worker who has come out of retirement and is now working via agency back into her old job. I have been told that the last 2 social workers did not fill in the assessment correct and all this could have been resolved by October 2011. Instead all my daughter has had in services is only 6 nights from June 2011 to today. I have had no respite offered, but they are prepared to pay for 5 nights PER YEAR wow!

The social worker cannot guarantee that I will get the same level of service my daughter had, but advised me to write to the MP. I am not writing any more stuff to politics, I will just get the solicitor to deal with it and if possible go to court.

I have no respect for any political party because I am now a carer for 32 years, a long struggle to get some rest and respect for my disabled daughter, and I see no government that has satisfied any agenda for both carer and disabled.

Let's see what happens next! Will let everyone know.