Direct Payments

[barkingmad]

Arrrrrhhh! Lindsey make the phone call, thats the best time to show them your house!!!
othrwise you end up like me tidying before they come

[MandyG]

hi guys - looking for advice again

you all know our situation - I have HMS, hubby has suspected narcolepcy and 2 out of 3 of our young daughters have HMS too

we turned down advice before about trying to get help from social services purely cause we didn't want random people in our house doing our chores or being with our kids (I am a bit of an overprotective mummy)

anyhoo - had a thought. one of our friends is a carer to a young man with autism. she has done it for years and she mentioned she gets paid from his parents via direct payments. She has been told they no longer need her as they are going with another carer from the council this time. So she will be out of a job

well the thing is - I am really bad just now, and our 3 yr old is having really bad days as nursery is really taking it out of her - getting her to leave th couch is really difficult and she refuses to go most of the time. Also just found out our 5 yr old def has it too and she is on meds now etc etc

anyhoo - we really could do with help around the house, or help getting becca to and from nursery or, for me, help doing shopping (kills me every time as I struggle with the trolley etc), basically help in all areas.

do you think we could get direct payments and pay our friend to give us some extra care?

I wouldn't want a stranger in, and becca does not take to strange people - she knows our friend and we know our friend is good at getting becca motivated to go places etc. I am only considering this cause I think I am now burning on empty - especially as eldest has problems which is causing me great distress to think I now have 2 out of 3 with HMS and to think of the pain they are both in.

it is also difficult for me to get out full stop - the thought of going out tires me and as you know we have no help at all from family. I could possibly imagine having our friend helping with things might make us not feel so trapped. (my husband doesn't like going out of the house due to fear of passing out in public now)

what do you think?

we have a man from the carer's centre coming out a week on monday to help me with my dla application and to do a carers assessment on me and our 5 yr old. so I was going to ask him. Like I said before we have been told to ask social for help but we would all feel more comfortable with someone we trusted - especially when it comes to the kids.

any advice greatly appreciated

xxxx

[MandyG]

can anyone help me with this?

xxx

[Blaadyblah]

If you want to go down the direct payments route you need to get an assessment done by your social worker (regardless of who you're intending to employ). There'll be an assessment of your needs, then a financial assessment (to determine how much you need to pay towards the care package) and finally an award - haven't got to that bit yet, I've had my financial assessment but am waiting to find ut how much help we'll get.

[gila]

ahhhhh blaady to the rescue!!!!
just as I was posting not really helpful post...

sorry mandy- I dont really know... have no experience...

but from what I've read... the social is actually rather keen on peops using 'direct payments' - saves them admin costs- and as far as I understand yep, it is your choice who you employ
(someone employs their stepmother, I seem to remember)
maybe try pm ing some of the peops in this thread that do have experience with that system?

good luck
xxg

[Rosie]

Hi Mandy

Not much to add, except that you can definitely employ a friend to provide care/help if you are granted direct payments. As someon has said, you need to get a care assessment done, this will state what help you/your family need. The rules on who you can employ discount certain relatives and people you live with, but it is up to you who you employ. I have to go down this route soon, I have been putting it off for ages. The guy from the carer's association should be able to tell you how to go about it, and may even refer you himself, or possibly offer to be there for the assessment.
Good luck.
Rosie

[barkingmad]

Hi mandy, I am currently going through this process as getting fed up waiting for my carers all mornming!

You def need,as Blaady and Rosie say,a full social care assessment (ring your council and ask for one), they then assess whether you need help with care and how much, some councils dont provide help in the home, and as muchadou has said some wont help with child care (I dont know why).

Once the social worker has made the assessment then she will offer you direct payments or services from a contracted agency. Direct Payments will give you more freedom but you have to do PAYE and Tax. There is usually a dept that will help you with all of this. As far as I am aware friends can do it but not a relative or someone you live with. the direct payments has also got to be used for care provided as according the assessment of needs. You need to keep all receipts etc and every few months you need to present them.

I am sticking to the same care agency as they have all been interviewed and CRB'd and I wont have to worry about PAYE or tax, just pay the agency direct and organise my care times and the people I prefer to come.

Good luck with it all.

[MandyG]

I feel so let down

just had the guy out from our carer's centre - he helped me and gave me tips about how to fill in the dla form - I thought he would go through it with me, so he didn't actually tell me anything I didn't already know

second - we asked him about the direct payments cause we have been told by others we should be entitled to help. Well would you guess? our council have no money at all and are not processing any new direct payment claims - he even said they aren't really willing to do any new carers assessments or big proper social care assessments cause there is no point due to no money

we cant get the house done up - we were hoping to get a grant so we could put a bedroom in attic as we have 3 kids and only room for 2 beds. plus becca needs her won space to deal with her daily pain - he said he has people waiting years for a basic stairlift due to lack of money.

we have already been waiting a year for railings for becca.

we did say if we didn't get the grant we would just save up all our dla so we could get the attic done - but I am struggling with saving all of it. It all gets eaten up with food or saving loads each month to pay for twice yearly gosh vists and all the extra food we need for our kids.

I just feel so let down by the whole thing - looks like we will just have to struggle on, and I will have to run on empty and what help do we get? maybe an occassional meeting with someone to offload to.

sorry about this - I am just so angry.

he also suggested myhusband stop getting IB so we can both apply for income support as carers cause if I get dla he could get carers allowance and we both care for each other blah blah blah, but then he said you might not be financially any better off you might be worse off - what is the point then?

[parent]

Hi Mandy,

I know you are very angry right now, you have every right to be. Please don't do anything hasty with regard to your benefits. I don't really know how the benefits work in your area but i don't think it is as simple to come of IB as you may have been lead to believe. Income support may not help you becasue you are refusing another benefit in favour of them.
( something similar happened to me i was in receipt of income support i then became entitled to industrial injuries disablement benefit the letter said it might affect my income support i was then thinking it will stop other things. i said i wouldn't have the IIDB i was told i couldn't give up one benefit in favour of another) So please be careful.

Is it possible to make a claim for income support you will probably have to list all the benefits that you receive it maybe that you have a small entitlement to income support. I think there are different rules for Scotland & England do you have the equivelant of citizens advice bureau i would certainly make use of this service. And as for assessments, again i don't know alot, haven't had to much to do with them but i thought everyone had a right to be assessed the patient and the career as you both have needs!!

Best of luck
Teresa

[barkingmad]

Hi mandy,

I am in shock! I seriously dont think they can refuse to conduct a carers assessment or do a social care assessment...its a law I think.

Where did this guy come from?

And major adaptations are done on needs so if your needs are higher than jo bloggs, who has been waiting 18 months for a walk in shower, then you go ahead of jo bloggs.

Its true that at this time of year the councils are usually strapped for cash but they get their new budgets in a few weeks time.

Mandy maybe you should ring your council and double check the info the guy gave you is correct...if it is write to your MP.

Let us know how you get on.

[MandyG]

thanks teresa

dont worry I wont be doing anything. We had to fight for every thing we get and I kinda know how the system works - to a point.

I have to work from home as self employed or I lose the £265 a month working tax. Because I get this and hubby gets IB we aren't entilted to IS

although we had a call from people at council tax a few months back and she said our income was less than it should so told us to claim IS which we did. later found out the council tax people made a mistake so we weren't under the amount. Still waiting to hear about that IS claim though

the CAB are rubbish up here - they have very few appts and when they do it is like 2 months later.

I just feel so let down cause we should be entitled to care help. We have a friend who works as a carer and she helps us too and we really wanted direct payments so we could employ her which would help us out more and almost have us live a better life.

anyway - I was just fuming earlier

thanks for listening

xxx

Donna - the guy was from our Carers centre - part of the princes trust, I think

he did give me the contact details of a woman at the council who deals only in direct payments so am gonna give her a wee bell to see.

I suppose I will have to try and contact social services myself again (tried a year ago and got past from pillar to post cause no one knew which dept to put me to as our situation is so unique and complex apparantly)

[barkingmad]

Hi Mandy,

if you needs are complex and unique then they should def come out to see you.

Going back to the Direct Payments you need a social care assessment first and its policy that as many of us as possible go onto direct payments, I suspect that its an attempt to reduce the contractual obligations to the care agencies by making us employ directly or indirectly ourselves through the care agencies, I think that social services pay us a set amount to pay for the agreed care needs, if an agency then says its more than the amount from social services we might have to make any difference up. least thats what I understood from my direct payments meeting last week.

Let us know how you get on ..am interested now how this can be resolved!

[MandyG]

just thought I would let you all know that I contacted the woman who deals with direct payments.

she replied this morning and said that the carers guy was wrong.

She said the council have a duty to offer direct payments but first we have to be assessed

so she has given me all the relevent office numbers as I need the adult team to assess my husband and me and the child disability team to assess the kids.

she is also putting in referrals to them for us from her.

looks promising so fingers crossed.

I just hope I can get somewhere with the OT and see if we can get the house done

xxxxx

[barkingmad]

Thought so hun! He obviously needs to go away and do his homework! I'm glad you didnt leave it as that and think that was the end of that route. Direct Payments does give you a lot more freedom and control...she says as she still hasnt arranged for the Direct Payments to start yet!

[Blaadyblah]

Woo! I got a letter from Social Services this morning, they've finished their financial assessments and confirmed that I don't need to make any contribution toward the award they've made (which was detailed in the letter too). I'm going to be able to employ someone to come in two or three times a week to help me keep on top of the housework, chop veg, take me out and help with personal care, forms and so on. I thought I'd feel ugely relieved and excited but truth be told I feel a little strange about it. Still, it'll be lovely to be able to go out shopping when I want to rather than when someone else is able to take me.