Wish me luck

[CarerQuie]

Well,SS are really causing us a l.ot of grief.

 

We asked for help and Rh's needs were assessed and a care package of 10 hours a week was put in place.last year,they tried to reduce it to 4 hours after 6 weeks.

 

Now,they are saying that ALL the care has to be given in the home.This is not what we asked for but they said that they want to re-integrate him into the home.We want respite and for Rh to go out in the community.

 

I then offered to meet them halfway and have 5 hours home based and 5 hours community based but they said 6 hours home based/2 hours community based for 4 weeks,then thereafter 8 hours home baseed/2 hours community based.

 

All of this has been decided without reviews AND they notified the agency providing the Carer BEFORE telling us.This is extremely discouteous.

 

They have said we must have a family conference and that my other 5 children have to be prepared to accommodate Rh's needs.They have been doing so for the last 8 years and I have one child doing A2 and one doing AS in the next few weeks but despite this and having 5 other children they are still insisting that the package has to all be homebased.

 

I've had enough of them disregarding our wishes and taking decisions without consulting us,so I'm seeing our MP at 4.30pm tomorrow.

 

Please wish me luck and,if anyone has some words of wisdom,I'm all ears.xx

[jb1964]

Hi Carerquie,

 

Sounds like you're having a difficult time - I haven't got any advice as I don't know anyone whose been in this position but it seems as though they're being particularly unfair considering you have 5 other children 24/7.

 

Is it a regular carer that you have - could they put a statement in saying that they cannot give him the care he needs in such a busy household?

 

Wishing you loads of luck and best wishes that you gain something from your MP tomorrow - and I'm sure someone will come along soon with some really good advice for you.

 

Take care,

Jb

[lindy-lou]

best of luck Kris,give em hell x

[Paula]

Good luck.

[lorryw]

Hi Carerquie

You have my sympathy, the same thing is happening all over the country. It seems to be the politically correct (and cheaper option!).My friends son leaves college in June. SS have hummed and hawed about provision and yesterday announced that she could have ?200 a week direct payment to buy and pay for his care. They felt he could access local facilities with a carer. The family will have the responsibility of finding a carer, paying wages, tax, insurance and her son will be socially isolated.

I have contacted our MP and she is trying to make changes but we are constantly told about lack of funds etc. I cant even bear to go into my own personal situation with my son.

I wish I had the money and energy to find out how we stand legally. Im sure that once a care package or need has been identified the local ss dept has to provide that service. I am just finding my way around the system and its a minefield.

Getting your MP on board may be all thats needed to change SS mind, sometimes a little prod is all thats needed.

Good luck and let us know how it goes, Ill keep my fingers crossed for you.

Love Lorainexxx

[OPooh]

Hi Kris hope it went well hun. xx.

[CarerQuie]

We saw the MP and he listened to everything we said.

 

We said that,whilst we were aware of budgetary constraints and that other children probably had more profound needs,that we had only asked for 10 hours help a week and that we had wanted community-based activities.

 

for some reason,SS feel this 'isn't working',although we feel it is,and they want to aim to 'integrate him' into the family.'

 

We said that all this was over 10 hours a week and they were trying to dictate that all of the hours should be in the home,despite the fact that we asked for respite.I said that SS seemed to think that we were being particularly difficult in finding a dedicated area of our house for a Carer to work in and that they seemed unable to understand that with 8 people living in our house,that there isn't easily any spare space.

 

In order to find the space,we have had to free up a boxrooom 3.5 feetx6.5 feet,which also doubles as a bedroom in holidays when our eldest son is home from University.

 

I also said that despite the fact that my elder daughter is taking her A2's and my younger daughter is taking her AS levels and our number 2 son is in the forst year of GCSE's,they are still insisting that the package isn't working and that the care MUST be given in the home.

 

I said also,that not only were they not listening to us,that they hadn't once sought my child's opinion and offers to compromise and have 5 hours home based and 5 hours community based were also rejected.

 

The MP took a copy of our latest letter from SS and said that he would write to them on our behalf.

 

To be honest,they are bullying us.The normal convention is to bank unused hours but they are also telling us that the hours can 'only be used Monday-Friday as identified in the core assessment' and that if they can't be utilised for any reason,that we will lose them.

 

We await further developments with interestI did actually tell my Social worker that I was seeing the MP because,unlike their hidden procedures and lack of clear,transparent policies,that I had nothing to hide!xx.

[Guest hallyscomet]

Hi CarerQ

 

Just sending a little prayer that you get the support you need

 

Hailey <'>

[BuntyB]

Just a thought, but have you had yourneeds as a carer assessed?

if not, you have a right to some respite. I know some carers have threatened that they will put their child in care before they are listened to, and that's appalling!

 

You might find this article interesting:

 

http://www.communitycare.co.uk/Articles/20...inadequate.html

 

Keep on at your MP, and anyone else who is reading this and finds themselves in a similar situation. Carers do get a raw deal and on a pittance, so I say ram it home about yours and your other children'sHuman Rights to a right to family life, which is more important than a policy of 'integration' (which is fast losing credence!)

[CarerQuie]

Thanks.I did find that interesting.The Social worker is coming on Tuesday and I said that I want a date for the Casrers assessment.He said we'd 'talk about it'.I said that,by law,I'm entitled to a carers assessment and I expect it to be done.xx

[OPooh]

Glad the MP listened. Annoys me that we have to fight for everything. Hope it went well today.

 

<'>

[phasmid]

When he arrives give him a letter asking for a carers assement to be carried out - that makes it an offical request they must respond to. ALL the family are carers too don't forget.

[CarerQuie]

He cancelled the meeting.However,he did say that the carers assessment would be done by another SW.He did say that I could have one as the substantive carer but that my children weren't entitled to assessments.

 

The MP has written to SS now,so I await developments.xx

[OPooh]

Grr who do they think they are cancelling meetings like that

Don't suppose they said when another one was coming out to do the assessment either?

 

<'> <'> <'>

[CarerQuie]

no.He said that he needs to discuss it with his line manager first and she is on annual leave.I doubt if they can have a p**s without their line manager's say so!xx

[Mother in Need]

Im sure that once a care package or need has been identified the local ss dept has to provide that service. I am just finding my way around the system and its a minefield.

Wishful thinking. My solicitor told me that they legally have to do the assessments, but that they are not legally bound to follow through on any of their own recommendations....

[OPooh]

Why is it they are never there when needed...am sure they don't really work

[gladysmay]

Wishful thinking. My solicitor told me that they legally have to do the assessments, but that they are not legally bound to follow through on any of their own recommendations....

 

 

Hello, I only joined yesterday but have seen so much that resonates with my experience, although I am known to our local Carers organisation and attend mtgs when I can I also found it almost impossible to get an assessment either for my son with AS or for me as a carer. When I spoke to their dept I was frankly, horrified by their lack of expertise or understanding of ASDs, they were suggested he should be medicated over the phone, and had such generalised stereotypical views I decided this was a battle I did not want to fight, because I had to ask myself what they would put us through, having jumped through millions of hoops already and being damaged by them all along the way, I knew of other parents whose kids had been assessed so many times for things that should have been their right, they had lost count! one parent had 18 assessments!

 

nevertheless I wish anyone coping with this difficult area the very best and I sincerely hope you get what you are entitled to.