Loosing Direct Payments for Autistic Son

[phaedra]

Well more good news here

Just got off the phone with Durham County Council, my Autistic son has a personal assistant 10hrs a week, took us 2 years and a formal complaint to get her. She gets £320 a month which they pay into a special Direct Payments account so I can pay her, when it was set up I was still managing to keep him in college and was getting Income Support for him. Now he's left (as there's nothing else they could offer him) he gets his own benefits, ESA and DLA.

Because he lives with me and "doesn't have any financial outgoings" or special needs (apart from 24hr care) they've assessed him as needing to pay £53 a week towards his own care!. That leaves him £60 a week to live on, we live together as a "couple" with both our incomes pooled together which is the only way we can afford to, if he had to pay for what he eats and the amount of clothes he goes through plus gas, electric, water rates etc.etc. he'd never manage.

[davewhit]

Well more good news here

Just got off the phone with Durham County Council, my Autistic son has a personal assistant 10hrs a week, took us 2 years and a formal complaint to get her. She gets £320 a month which they pay into a special Direct Payments account so I can pay her, when it was set up I was still managing to keep him in college and was getting Income Support for him. Now he's left (as there's nothing else they could offer him) he gets his own benefits, ESA and DLA.

Because he lives with me and "doesn't have any financial outgoings" or special needs (apart from 24hr care) they've assessed him as needing to pay £53 a week towards his own care!. That leaves him £60 a week to live on, we live together as a "couple" with both our incomes pooled together which is the only way we can afford to, if he had to pay for what he eats and the amount of clothes he goes through plus gas, electric, water rates etc.etc. he'd never manage.

dLA is paid for care needs to use it towards his carer seems fair to me ... that said you could tell council if they must charge then you might need them to find him sheltered/shared housing as you cant manage on lower money that would cost them £1,000's

[Duncan]

Well more good news here

Just got off the phone with Durham County Council, my Autistic son has a personal assistant 10hrs a week, took us 2 years and a formal complaint to get her. She gets £320 a month which they pay into a special Direct Payments account so I can pay her, when it was set up I was still managing to keep him in college and was getting Income Support for him. Now he's left (as there's nothing else they could offer him) he gets his own benefits, ESA and DLA.

Because he lives with me and "doesn't have any financial outgoings" or special needs (apart from 24hr care) they've assessed him as needing to pay £53 a week towards his own care!. That leaves him £60 a week to live on, we live together as a "couple" with both our incomes pooled together which is the only way we can afford to, if he had to pay for what he eats and the amount of clothes he goes through plus gas, electric, water rates etc.etc. he'd never manage.

If he is on low care DLA you might want to check if that can be increased to middle or high care. That would allow you to claim carers allowance which could boost your income as well.

[phaedra]

He's on midde rate care so I do get carers allowance, I also get my own benefits as I'm also disabled. Basically we live as a "couple" sharing incomes to pay for everything, he has a limited concept of value for money and would happily pay whatever he was asked if it was for something he wanted enough.

As things are we are managing, but, if we now have to pay out over £200 a month it's simply not possible, we could never afford it so he will loose his PA and I'm back to 24/7 care with no respite. I've already lodged a formal complaint with the NHS Trust as I've been waiting over 13 months for a carers assessment as I have days where I just can't manage, on these days his PA helps where she can and I pay her out of my own pocket for her time.

His contract with his PA states we can use her for "extra hours as needed" or she can accompany him on a holiday, each time I've asked his care co-ordinator about doing this it's been refused as it's "not in the care plan and you can only use the 10hrs a week" I've never even seen a care plan and her contract says otherwise but Direct Payments have told me that if I do use her for anything not in the care plan they would ask me for the money back. His care co-ordinator is great, we see him once a year, saw him 3 times last year as every 3 months I was asking where my assessment was.

[Stepheninleeds]

Sounds a little complicated to me, but then even my claim does. I would suggest advice from someone like the CAB who can see if you can challenge this, or what you might claim.

[phaedra]

To be honest, if I don't get my IS payment tomorrow I feel like packing him a bag and dropping him off at Social Services and tell them I can't cope any longer

He relies on his PA to get him out twice a week which gives me a few hours to myself, he also goes clay pigeon shooting but as she can't drive I have to take him and it's now at the stage where every trip I'm having to stop the car and find a bush (middle of nowhere) or end up soiling myself. I have 4 hospital appointments over a 4 week period for my disabilities and then will have to go for an extended investigation next month as my IBS isn't manageable any longer. I was planning to get his PA to stay withhim here while I'm in but unless I pay her myself (difficult) it's not going to happen and I can't leave him on his own.

[Stepheninleeds]

Then get some advice, we can only give general, which often can be enough. However, at times like yours you need professional advice. There are several Autistic agencies locally, & the CAB. Fight back, do not feell you cannot do this, you can, with help. If you find our your rights & if you can fight, then you have hope. You need hope & maybe someone can give you that.

[Duncan]

He's on midde rate care so I do get carers allowance, I also get my own benefits as I'm also disabled. Basically we live as a "couple" sharing incomes to pay for everything, he has a limited concept of value for money and would happily pay whatever he was asked if it was for something he wanted enough.

Are you also on DLA middle care?

[phaedra]

Not but should be

Had my DLA in for renewal since early Jan due to Motability not wanting to extend my car lease as I only had 6 month DLA left on the award.

[Duncan]

Not but should be

Had my DLA in for renewal since early Jan due to Motability not wanting to extend my car lease as I only had 6 month DLA left on the award.

I was thinking you could get the severe disability premium of £55.30 a week if you were on DLA mid care. If both you and son werre on mid care, the severe disability premium could be paid to both of you, but you would have to drop the carers allowance claim as severe disability premium can't be paid if carers allowance is also claimed.